Loungers #8

Discussion in 'Chit Chat' started by spacee, Nov 27, 2009.

  1. spacee

    spacee Member

    I figured out tonite how I got sick. Bear with me if you can stand it.

    I have figured out that I have HTLV 1 or 11, I do not know. This is from a test in 1991.

    It is a retrovirus that can cause lymphoma and leukemia. It is more prevalent in the
    Carribean. That is how I know how I acquired it.

    25 years ago I was casual friends with a woman...meaning we didn't get together often.
    Then we both had kids about 3 months apart. We babysat for each other when the other had an appt. Our kids went to the same preschool, took swimming lessons together. Then we both moved. Me to Lakeland Fl, she to Texas (we lived in Orlando). We both started having panic attacks, a couple of years later we were no longer in contact but a mutual friend told us that she was sick. I felt too sick to cheer anyone up but one Sunday afternoon found the energy to call her. By then she and family had moved to Virginia. We had the same symptoms. Tachycardia, fatigue, etc, etc. She told Her doc knew what was wrong with her and did the EBV test. She told me to ask for that and it came back abnormal.

    Anyway, now we know it is more than ebv. But the first thing she asked after we figured out we had the same thing. "Did you give it to me, or did I give it to you?". I said I don't know how I could have gotten anything. Then she told me. They had lived in the Carribean and her husband got these terrible boils repeatedly.

    HTLV is more common in the Carribean. A couple of years she developed Lymphoma. Went through chemo and bone marrow transplant and has had no recurrence. I saw my uncle I had not seen in 15 years. Within a few years he was dead of lymphoma and my cousin (his daughter) on disability with FM. My friend's son has FM, her daughter had a mild case of CFS and recovered. My twin had a 6 year case of CFS and recovered.

    No treatment for HTLV that I know of. Well, now I know. . The only thing that I can take comfort in is that it seems that since I have taken Transfer Factor, I can think of no one that I know who has gotten sick. That's a relief.

    (((hugs))) Friends, cause I need it right now. I'll be ok though...we are tough. We started out tough or learned to be. I don't feel like "why me"...stuff just happens.

    It is cool down here! I had to wear a jacket today. Tomorrow we might have the heat on...does make it feel like Christmas is coming.

  2. victoria

    victoria New Member

    Are there specific tests for either of those? Is there a cross-reaction with these in testing for EBV? I've never heard of them.... but I'm guessing there's a lot of stuff we haven't heard of or that the scientific community even knows anything about /or/ much about.

    How did you figure this all out?

    ((hugs)) to you - you know, there's no way you could've known at all about this, and you never acted irresponsibly... IF indeed you passed it on somehow. You may not have tho, it's not necessarily a clear pathway to them all, it seems to me. If you did, there's obviously a susceptibility factor that one needs to have to 'catch' it.

    Hope it warms up for you... do you really need cool/cold weather to get ready for Christmas?

    Thanks Fay for the good wishes. I'm still "under the weather" despite the beautiful day. Our neighbor's friends just came in from Saskatchewan Canada! They're very happy to be here an headed to the beach... but he's a singer/guitar player/composer and giving a show tonight. I really wanted to go, but, just couldn't muster myself. Oh well, maybe we'll go to the coast early next year... if hotel room prices drop, that is. Not sure tourism is going to be any better than last year.

    Hope you're able to eat a little something by now Rock... I did want to tell you about Jones' soda: This year they debuted “Tofurky and Gravy” Flavor Soda (they also have five other seasonal soda flavors which include: Green Bean Casserole, Mashed Potato, Fruitcake, Cranberry, and Turkey & Gravy). I admit I don't think I could even taste any, except maybe the fruitcake or cranberry!

    Speaking of armadillos, once I went camping on a barrier island off Georgia... we heard all this crashing thru the palmettos once afternoon at our campsite and wondering/worrying what was coming toward us as we couldn't see thru the undergrowth. Turned out to be a small armadillo!

    Hope everybody survived yesterday.... and stayed home today!

    all the best,

    [This Message was Edited on 11/28/2009]
  3. FibroFay

    FibroFay New Member

    Oh, Bless your heart, Dear Girl. The pieces of the puzzle all fit. What are you going to do next? I pray there is effective treatment soon. Can you even imagine that many of us could get well, or much better than we are now? Spacee, there is hope. It's almost within reach. Hang in there, girl.

    I cannot write much today. I woke up with severe vertigo. I get this at times. It really throws me for a loop. I take OTC Bonine for it. But, it sucks. Cannot stand the computer screen.

    Cold and windy here. Sunny. 43 degrees. We've had snow flurries, but nothing measurable. Did anybody start their Christmas shopping?

    Spacee, you are the sweetest person. I hope and pray you will be better real soon. Do you have a really good doctor who will treat you asap?

    Hugs again.
  4. Ranigar

    Ranigar Member

    Wow spacee I don't know what to say to all that.You traced this all back is really remarkable.
    Fibrofay I get vertigo pretty often.Usually in the Fall for sure but one yr. had it an entire yr.It comes on randomly and sometimes severe.I feel for you.
    Not much on TV so I've been watching DS free Netflicks on my laptop.They have a nice selection and they're free.
    I ordered a couple toys on line for the toddlers in the family but will probably hand out gift cards to the teens in the family.DH and I haven't bought each other anything for yrs. so that isn't a problem.I will take homemade goodies to each of the kids families.Cheeseball,pumpkin bread and cutout cookies.
  5. spacee

    spacee Member

    Not much access to the puter today. Lots and Lots of football on TV though. Let's see, yes, Univ. of Fla did win!

    Ya'll are sweet and kind and thanks so much for the reassurance from you all.

    First I must comment on the Jones flavored drinks. We have Jones here are some grocery stores but we started going to a smaller store. Guess there hasn't been enough room for the Jones. Yuk, though. I mean, really??? I would love to have been a fly on the wall when they came up with the idea!

    No, I don't need cold weather for Christmas mood. I missed the change of seasons for about 3 years and then I was over it. Oddly enough, someone told me that was how long it took. I do not believe that was done scientifically...snicker.

    I love Netflicks. I started them when on the Marshall protocol where you stayed out of the sunlight. Well, it threw me into staying awake late at nite...still that way. I am going to pass it on to my kids. I love homemade goodies too. We had a neighbor who made a lot of goodies at Christmas and would bring us a plate. After 18 yrs, I was really used to getting that each year but they moved anyway...lol. Our store's assorted type is mainly something with a coating of chocolate. Nice but not quite the same.

    The figuring out what I have was partly luck and partly that I went to the Cheney Clinic the very year they were testing their patients for The CFIDS Novel Retrovirus (1991). The luck part was that I had a copy of it and found it after all these years at the same time the XMRV came out.

    Then came the info that Elaine Defrietas, Phd had found HTLV in CFS patients in 1991. The Cheney Clinic was testing their patients because of her findings. 15 of their patients had HTLV.

    Now the blood banks test for it. So far I cannot find a treatment. It is believed that usually it lies dormant up to 60 years except in about 5% of the patients.

    Oh yeah, I have high titers to EBV and HHV6 and the ANA is high. If I don't watch it, one of these is going to take me out....smile.

    My doc is going to fall off his chair when he sees this. Sometimes he surprises me with what he comes up with..so we will see. I am sorta not counting on anything. And I am a little concerned that I might accidently make it react as lymphoma or leukemia. It's a quandry.
    I think Rock will probably have the answer. Like there are two kinds of people...one with HTLV who should let a sleeping dog lie and one kind who should use Cheney's protocol.

    Vertigo. Man that is bad. I have had tiny, tiny bouts with it related to the orange blossoms blooming. Very debilitating. Hope you girls improve shortly!!

    ((Hugs))) to all back!!

  6. FibroFay

    FibroFay New Member

    Spacee, good to see your post. I agree with, Vic. There's no reason to feel guilty for passing on this illness to someone else. There's no proof that you did. Also, how would you have known about it being contageous? When I was diagnosed with FMS, my doctor said it's usually chronic, it's not life threatening, and it's not contageous. Ha! Now it appears doctors were wrong on several counts. But, doctors do the best they can. And so do we. No need to kick ourselves around over things we didn't know and cannot control. It's no one's fault.

    Renigar, the homemade goodies are the very best! The older I get, the more I appreciate homemade gifts of food and crafts. When someone puts work and love into a gift it really touches my heart. I'm gonna give the grandkids money. I just cannot afford to shop for the grownups. They understand.

    My youngest daughter mentioned the other day she was considering getting me a Meals on Wheels gift certificate so that I don't have to worry about fixing something to eat when I'm feeling so bad. I've never had this service before, but I hear it's a wonderful service. I think I'd really appreciate that.

    The vertigo is better today, but I am so washed out and exhausted. I used my cane for balance yesterday when I needed to go to the bathroom, etc. Golly days! It was awful! Felt like I was falling all over the place. Had to hold on to the kitchen counter when I was getting something ready to eat. What fun!! I'm sorry some of you have to know what it's like to have it too. I know it's common with our illnesses. Today I'm doing much better.

    Hi to Rock, Barry, Granni, ond others who are "missing in action". I hope you are all doing okay.

    Everyone have a nice Sunday afternoon----LOUNGING.

  7. Ranigar

    Ranigar Member

    Hope you had a nice holiday and nice weekend.Went out to brunch yesterday just me and DH.I felt a surge of energy and wanted to walk around to the shops but son couldn't stay at home with grandpa to long and neither of us had our cell phones handy to see if we had time.Just as well the energy was slowly draining on the drive home.I think it was the coke I drank at lunch.It ended quick.
    I'm thinking about digging out indoor decorations this week.There's so much to do at holiday time but I'll do what I feel up to and the world won't come to an end if I can't manage all that I want to get to.Niece wants us to attend her Nursing Graduation tomorrow night but evenings are a killer for me so I hope she'll understand.Take care everyone and try not to overdo.
  8. jole

    jole Member

    Wow, Spacee, I can imagine what you must feel after researching and feeling you found the answer to your DD. It must be even more devistating than finding out you had it to begin with...at least it would be to me! I too worry about spreading it, but as others have said, we wouldn't intentionally wish this on anyone in the world, so we can't feel guilty over what might have happened...although I know I still do...lol.

    Victoria, hope you're feeling better by now. Those down days seem so loooonnnggg, especially when you have plans and can't do them. That concert sounded fun. I'm sorry you had to miss it!

    Fay, I hope your vertigo is better. I have had days of walking like a drunk...lol...running into walls and doors for no reason other than your body won't go where you're looking! And lying in bed spinning....what a feeling!! You certainly don't deserve to feel like this! I'm glad your cane helps you. I tried using one, and my coordination is so off all I could do with it was trip myself...lol...looking of course more like a drunk!!! What a life, huh? The Meals on Wheels sounds like a good gift. Would certainly help out, but not sure if you can get them on just certain days? Hope so, that would be great!

    Ranigar, another weeble wooble...that darn vertigo! I see you also make homemade foods for presents. I also do that for my kids. They're so busy with work and families, I hope they enjoy the cookies, candy, etc. I'm ready to start now so I can have it done. Freezers seem to keep things well. Sorry to hear your evenings are the worst part of your day. That keeps you from doing a lot of family things, doesn't it? Bummer!

    Sorry I've been MIA for a few days now. The weather seems to have knocked me down a notch or four...lol...but today is better. I have an eye appointment this afternoon, and am (sorta) anxious to see what he has to say about my vision problems since my testing last month.

    Will also pick out my glasses frames today. Okay, I won't, they will since I can't see to do them. Who was it that was talking about being able to see what they'd look like on through some machine? (Sorry, I forgot the story already, and found it so interesting at the time!) I can't see without my glasses, so someone else has to decide when I try them on. It's always a total suprise to me when I get them....which I'm not always happy about...lol...

    This is long and I think I'll go lay back down for a few hours. The eye office called and woke me up at 8 to remind me of my appt. I didn't get to sleep 'till 3:30 the past 2 nights, so am exhausted. Talk to ya all later! Love you guys...you're ALL the greatest.....Jole
  9. spacee

    spacee Member

    Dizzy for one, sjogren's, buying eyeglasses. I am really liking homemade gifts too...especially the food. Ok, well, cookies. haha. That is what I asked for for Christmas from the kids. I like really simple cookies with my hot tea.

    Thanks for the encouragement, gang. I know all of us don't like being contagious (if all are, some may be not)...I mean, who would. I do remember Dr. Cheney writing some years ago that there was not a island remote enough to avoid the virus part of it.

    I am so excited you guys. I found a watch like Hubster loves on eBay for $2.99 with free shipping. I hope I "win". He would be so excited to get it. He had one like it for years and we haven't been able to find another. Big smiles on my face right now!

    Rock, there are two kinds of people. Those who like climbing stairs and those who don't. haha. My 1 yo grand daughter woke up in the middle of the nite, stood up and pointed to go out and climb the stairs, saying "Dat!". She is crazy about stairs.

    Oh, yes, the glasses. I do think some places have a machine. I don't think it has made it to my neck of the woods. Just as well....I get to "pick out" Hubster's glasses this way..

    Well, we are off to Washington DC on Friday nite. Let me know what you want me to pick up as a souvenir for you! I think I will do ok. We will fly at nite (less people and sensory stuff). There is a shuttle to hotel where I will veg during the day and then out to eat at nite. This is a "Continuing Education" thing for Hubster. In all of his years of working, this is the first one we have gone to. Probably his last too! haha

    Love you kids so much and very THANKFUL for you!!

  10. victoria

    victoria New Member

    Linda, flying to DC? That should be fun, but hope you stay warm. -Or wait, you're on vacation and returning home? --No, wait, you live in Florida, don't you? ---Ummmmmmmmm I totally can't remember who lives where/when/what. Sorry. In any case I hope you DO stay warm!

    I have a friend who sees Dr. Cheney, she and a couple others I know had that opening in the heart that's supposed to close right before or after birth actually re-open. There's a way to test it, I 'think' it was doing an echocardiogram lying down, not standing up.... sorry I can't remember, but it's somewhere online. If anyone's interested and can't find it, I'll try to find it or ask my friends. She's on a very complicated protocol regarding when to rub what transdermal creams on, etc., but feels it is paying off. Interestingly Cheney is one of the few not recommending immune boosters, I think.

    DISCLAIMER: do not take anything I say as God's truth, however, I could VERY likely be wrong on some details!

    Home made goodies are the best! Wish I could still do that but somehow I don't think it'd be a good idea to send food internationally, hehe...

    Hope the vertigo goes away, and hope everybody's feeling better, and hope everyone gets glasses who needs them... and hope everybody doesn't mind that I don't remember names. (I realllly wish PH would show the whole thread as they used to!)

    I think someone said some places had a computer photo taken of them and could "try" the glasses on that way? I wonder if there's any sites that let you do that, like with hairstyles? Seems like maybe bringing a camera with you would at least be helpful if they didn't have such a set-up? The tech could at least take a pic and then you could see it on the tiny screen with your current glasses plus a magnifier?! --And if one were able to bring a laptop to connect to, you could magnify the photo. Hmmm I'm full of creative ideas right now, gotta remember them!

    The best I've ever experienced was a large (maybe 1') hand-held magnifier, but since my vision has deteriorated, it was still blurry and distorted anyway for me. I had a friend help me once, the ones she thought looked good looked TERRIBLE once I got them - happily they didn't fit me right and couldn't be fixed as they just 'sat' wrong on my face (the original tech shouldn't have sold them to me); so happily I got to pick out new frames at no extra cost. The tech I had that time was great in advising me, TG!

    My stomach 'bug' is gone, but my hunger hasn't come back...
    thinking that's a good thing LOL!

    all the best to y'all,

  11. FibroFay

    FibroFay New Member

    It's cold, clear and sunny today, thank goodness. Yesterday was more cold rain! UGH! I hate Fall because of cold rainy days. Enough complaining already. I'm sorry I'm grumpy.

    I hope Jole finds great frames. I usually end up choosing my frames after the doctor has put the drops in my eyes and I cannot focus to see them. haha. It's a challenge. Usually the tech is really helpful. I find the older I get the more helpful the professionals become. I think they take pity on us older folks.

    Speaking of older folks, where's Rock? (hahahha) Sorry, I just hadda do that. Rock, I didn't mean it. I was just trying to be funny. But, where is Rock? Haven't seen him post for a few days. Hope he is doing well and no problems with his extractions. We are all thinking of you, Rock. I began reading East of Eden by John Steinbeck. Cannot believe I never read it before. Sometimes you just overlook some of the best books.

    Washington D.C. sounds like a nice trip. As long as you don't crash any White House parties and end up on the news. haha. Fly safe, Spacee! Have a wonderful time.

    Reinagar (I cannot spell your name right), I'd love to spend time sitting at your kitchen table and chatting as you bake and cook. The things you do are so warm and loving. Comfort food from your kitchen. Bless your heart. I'd sure do it for my loved ones if I still could. I used to do it, now they do it for me.

    Victoria, I like your sense of humor. You are a fun person I can tell. You have the best stories to tell about things you've done. Don't you just miss it all? I know I do. I'm glad your tummy feels better. Your appetite will come back, hopefully before Christmas. We have so many Christmas events scheduled in connecdtion with family, Church, and grandkids schools. I cannot attend them. It b reaks my heart. I know you all understand.

    The big medical board has dwindled down to almost nothing. I never liked all the drama and arguing, and I tried to stay out of it all, but I do miss the people. I wish it would not have ended this way.

    My love to all of you, and hope you have a good day.

  12. Ranigar

    Ranigar Member

    That's ok Fay you can spell any way you want.I hate that name anyway.I have know idea what it means.When I fist found the Fibro board I didn't know how to put in user names to log on so I turned to my computer son.So I get a masculine sounding name!Now I don't know how to change it lol.
    Made zucchini bread and cheeseball today.Oh,I put up a few decorations too.I got up feeling drained and slow but just kept moving and now I'm glad I got it done and in the freezer.I enjoy seeing my son and grandkids faces when they see I've made such a personal effort for them.They understand my illness so appreciate the gift all the more.sugar cookies Fri. I hope.
    DD got approved for their Dream House!She was over the moon.She should be in by Christmas.
    We get our glasses fitted on Sat.It took over a week after they were in just to get an appt. to pick them up.
    Spacee,another trip?Sounds like fun.I used to travel with DH on business trips and loved it.
    Ranigar Pam
  13. rockgor

    rockgor Well-Known Member

    Been away a couple days cause I didn't got
    no pep. Had two postcards and a bill sitting by
    the computer for 5 days. Finally took care of
    them this morning.

    Took them to the Post Office; then stopped at
    the market. Bought some Jello ready-made
    pudding. It is chocolate according to the label,
    but in reality it has no flavor at all. Just cold
    and creamy.

    I remember when food had flavor. Especially
    fruit. This modern stuff can be shipped to the
    moon w/o getting bruised, but who wants to eat

    Spacee, do you prefer "Spacee" or "Linda" or "Just
    don't call me late for supper"? One of my
    co workers had a mother who was like your
    neighbor. She used to bring in a big tray of
    cookies and candy to the office every year plus a
    Kahlua cake that was moist and dense.

    No body would say she was a celeb or role model, but
    she was always there w/ food when a neighbor
    was ill, etc. In my mind she did more good in
    this world than all the kings and Presidents who
    mainly lived in luxury and sent young men off to
    die in stupid wars.

    Yes, many little girls love stairs. The most
    popular example being Shirley Temple who was
    always dancing up or down them.

    Jole, are you getting Harlequin glasses like the
    ladies wear in Garry Larson cartoons? My
    mother had some in the 50s.

    I remember when the county school nurse came
    around during 6th grade and tested our eyes.
    It was discovered that I couldn't read the blackboard.
    News to me.

    Anyway I got my first pair of glasses. They cost
    $25. Probably about what the average wage
    earner took home in 1952.

    Just looked on the net. You can buy a pair of
    Vera Wang frames for $172. From conversations
    at the office, I picked up the impression that women
    gladly pay twice what men do for glasses. This is due to
    the fact that women are willing to pay for something
    that "makes a fashion statement".

    Will come back in a bit (I hope) and post some more.

  14. rockgor

    rockgor Well-Known Member

    Victoria, those Jones' sodas you listed sound
    like another one of your jokes. Especially green
    bean casserole. HaHa! I'm so old I remember
    when that stuff was new. Same time as chip
    dip. Mid 50s.

    A year or two ago somebody (Libby?) brought
    out green bean casserole in a can. I tried it.
    Not worth bothering with.

    There was a Libby plant in Rochester, MN when
    I was a kid. Had a water tower shaped and
    painted like an ear of corn. The joke was, "There
    gonna have to take down the water tower. Got corn borers."

    Last time I was to MN was 6 years ago. The
    plant and the water tower are still there, but
    the name "Libby" is gone. In its place are just
    some anonymous initials.

    Fay, does one have to pay for Meals on Wheels? I
    thought it was a charity or some govt. project.

    I can't remember East of Eden. Except that
    it was one of James Dean's 3 movies. I probably read
    it though. Read most of John
    Steinbeck's stuff when I was a teen.

    It was a mini series on TV a couple or 3 decades back.
    Wonderful score including a song called "American Anthem".
    Like everything else, it can be found on Youtube.
    Placido Domingo recorded it.

    Got my car widows washed. Remember the
    big brush fires out here (Los Angeles) last
    summer? Ever since the ash has been blown
    into the city. Have to wash the windows every

    Anthropologists report the same finding from
    ancient Pompeii. Many of the cars that were dug
    up had a lot of ash on them.


  15. spacee

    spacee Member

    Interesting. I didn't know that ash only got on car windows. (snicker). Boy, I'm glad I don't live in LA cause I "don't do windows". (Cleaning professionals often say that).

    Obviously, don't call me late to supper!! I forget to put my name, Linda or Lindy as my sibs call me). Have put Spacee so long on the other board. RIP. Can you believe what has happened to it?

    Renigar bakes!! When was the last time I did something besides slice and bake...and thought that was asking a little too much there. Yes, Nestle evidently agreed cause now you can "break off" and bake. That's incase all your knives are dirty? Good marketing. No, no, it is for "little ones" to cook. Duh!

    Fay, I am really truly sorry that you can't go to all your Christmas functions. That is hard. I guess I am lucky that about the time I couldn't do anything much, there wasn't much to do. Seems the people in my age group (younger than Rock) don't go any to things any more.

    Don't think that I didn't notice when Vic was told she had the best stories that Rock decided to post twice. ROTFL.

    I'm going to tell you what is going on. I have taken my 4pm ritalin and it makes most everything funny to me. Not everything. Not young men/women going to war. People who have lost sons/spouses/relatives/friends have my sympathy. I don't know how they bear it.

    Suppertime. We are having breakfast. I may post again later since this is a non-tv nite here. Or maybe we will watch that Netflix again.


  16. jole

    jole Member

    Thought that was what I was going to do tomorrow...and probably still will. My sis-in-law called and said we were to have a "ladies day out" for lunch tomorrow since it's my mother-in-law's 96th birthday. I really want to go eat with them, but the weather is getting rrrealllllyy cold here (and windy) so I doubt I'll be moving tomorrow.

    Had my doc appointment today..mainly a med review. The hospital is quite slow right now, and they're really worried about all the changes in health care.

    It's really not geared towards the rural settings at all, where so many of the patients are the retired population. The director of nursing said everyone's afraid...patients, docs, administration, everyone.

    Our doc office is actually inside our small hospital. I took some printed material on the XMRV retrovirus to my doc. She actually was quite interested, and said she wanted to read up on it. She's said all along that there was more to it than "just muscle aches". Wow, I was impressed!!! I was ready to "fire" her last time I was there....just goes to show ya....

    After my appt I ran into one of the gals from Medical Records where I did transcription after I had to quit nursing because it was too much for me, and she insisted I go visit the new department. It was nice to see them again, but I cried.....would love to be back there working!

    Spacee, no tv here tonight either. President's on talking about the war and I don't want to hear it either. Oh, and I LOVE breakfast in the evening! One of my fav meals!

    Hope you enjoy your trip..but gee...I can't think of anything (or anybody) that I want from Washington as a souvenir...lol...

    Vic, glad to hear you're feeling better, but hope you get your appetite back. I had something a few weeks ago that lasted 9 days...lost 2 pounds, and gained it back in 2 hours, I think.

    Fay, it's really hard to give up the past, isn't it? Don't know if it's really the giving up of the past or the feeling of worthlessness that does us in. I do understand and wish you could do as much as you wanted. I'm sure you were a very big part of community, and that's really hard to let go.

    So many days I think about our parents and how hard getting older was for them....at least we have each other to share our thoughts with...they had no one. I'm not sure how they did it!! Of course for most of them their lives didn't come to a standstill overnight, but still.....

    Ranigar, I love zuchinni bread...and zuchinni chocolate cake! Haven't made any for quite awhile, but it stays sooo moist! Gee, decorating and baking! Don't wear yourself out too much and have to suffer for it......I still haven't started decorating, unless thinking about it counts.

    Rock, no glasses yet. Now I have to use Restasis drops for 6 weeks! He said my eyes have improved a "little", but not enough. THEN he'll order my glasses. Wish he'd make up his mind!! No Harlequain glasses I hope...lol...may have to take Ranigar with me to pick them out though.

    I still have some of my old frames...my kids/grandkids think they're the funniest things. My son-in-law (chiropractor) took a pair of the "cat-eye" ones with him to wear in the office for halloween!

    Okay, I guess I added as I went, so nothing more to say. Wishing everyone a good day tomorrow. Hope to see you all then! .............Jole

  17. spacee

    spacee Member

    Waiting for the nitetime meds to kick in. On QVC they are selling a camera that comes with an intelligent card. I'm not falling for that one. It looks way too complicated.

    Jole, that is so scary that the doctors, nurses and staff are all scared about our health care system. And I live in a rural area too. No one wants me for a patient except the one I have had for 18 years...no one. Cause I have tried to leave him but no one wants me. (I call it "getting a 2nd opinion"). He is a good sport. And will order me just about anything. Just about I said...so sometimes I see a doc about my thyroid and a rheumy about my sjogrens.

    Bear with me here Rock. The kind of doc I have had the hardest time finding is a gyn. I am on my 6th in 18 years. Let me tell you the dumbest thing one of them has said to me after my exam. He was holding up the lab results from before and said "well, I can't read them because I don't have my glasses on". Now I have a woman doc. I think she is about 65. But quite bright. Asks all the right questions. 18 years ago she wasn't taking new patients but we have 2 new woman gyn's so now she has appts. (I was going to say 'openings' but that didn't sound right.)

    I have my clothes ready for DC. I have never been this organized but just let High of 35 and low of 24 be the weather report and it has a way of changing things. Yes, I live in Florida but I took a trip to NYC with my sis in Jan one year...her hubby had a convention of some sort. It was 6 degrees. I found some ankle boots (manmade materials (snicker) faux fur lining and just my size 7EW....lol. Hey, with the faux fur they don't fit bad and the price was right. These are saving my poor tootsies this trip.

    Hey, I think I want to try low dose naltrexone. It is for HIV (retrovirus) and autoimmune plus some other things. And it is reasonably priced $39.00 plus shipping for 90 days. Also good for pain. Since I won't be taking the XMRV stuff...I think I am on to something. (This is since I have the retrovirus HTLV).

    Ok, I am warning you that while in DC I will not have contact. So I am going to imagine that I am living in cold weather like Fay and Jole and commiserate.

    I have never been on jury duty. I was never called before I got CFS and then I was too ill. But my twin has and she said "I don't think it was what our forefathers had in mind." That reminds me of our political systems now.

    Ok, Nitey nite...later.

  18. FibroFay

    FibroFay New Member

    43 degrees and rain today. Need I say more?

    I hope you guys are doing well. I did watch TV last night. I wish I hadn't. I wish things looked better for all of us. It's sooooo tiring, isn't it?

    My daughter and granddaughter came today and cleaned my apartment for me, bless their hearts. Don't know what I'd do without them. My next doctor's appt. for a checkup is Dec. 21. I believe he will put me on Prednisone. I sometimes need a course of it (about a month) to feel better. It's been almost a year since he prescribed it and I feel like it's time.

    I agree that the health care overhaul is scarey. Spacee, no other doctor wants me either. I've had my present doctor for 20 yrs. In another year I'll be on Medicare, if we still have Medicare. Many doctors will not accept new Medicare patients now. My present doctor won't dismiss me when I go to Medicare, but if the govt. changes things and I can no longer see my present doctor, then where will I go? It makes me very nervous.

    Hey Spacee, how long will you be away? We will miss you!

    Rock, I don't know yet how Meals on Wheels is paid. Maybe if a person is on Medicaid it is provided by govt. funds. But, I'm on private insurance now and I know they don't pay for it. I guess my daughter will find that out. Jole, it really is hard letting go of the past. I grieve more this time of the year, I guess because of the holidays. Other times I feel pretty well content. This is just a passing phase for me, thank goodness:)

    Hi Pam and Victoria! Hope all is well for you guys.

  19. spacee

    spacee Member

    I wanted to share my two new fave tv shows. They come on TLC at 11am and noon here. Don't laugh. Cause this is serious....;)

    Say Yes to the Dress. Hubster figured out it was about wedding dresses before I did. I love the family drama and the drama of the workforce. There are 2 30 min. shows and it goes at a faster clip then some of those do. And then I can't wait to tell Hubster about them over lunch...except.

    What not to Wear is on and we have to talk during commercials. Today they had a show on how they make the show. They get over 1,000 nominations a week. They pick a few in one city and go do those type of surveys people do on the street with the people who are nominated (understand?) The people who are picked have to have a "strong" personality. (And bad clothes)

    I'm not sure that I would love these shows so much but I do an hour long "zapper" treatment and it sure helps the time pass. The zapper is what Mikie used to kill viruses in her body. I'm not sure if it is really helping or not. It takes about 5 months to tell. I will let you know in March!

    I am leaving home Friday about 1pm and getting back very late Tues nite. Despite the cold weather in DC, I am pretty excited about going. I really like hotel living. There is a hotel in Sarasota that people live in. Why didn't God make me rich instead of so pretty....snicker! (A friend used to say that all the time.)

    Ruby, the 2.5 yo grandbaby who lives in The Netherlands and is learning dutch, is going to Venice in May for a week. I've never been. She will send me the pics.

    Hey, I have an appt to try to weasel an rx for LDN out of my doc. I think it will cover most of what ails me. Retro virus, autoimmune, arthritis pain. Have I mentioned this stuff is $39 plus shipping for 90 tabs and for the first few months you take 1/4 tab. Google Low Dose Naltrexone. Seriously fascinating.

    Hugs back to all!

  20. Ranigar

    Ranigar Member

    I have gotten myself into a fine mess.8doz. sugar cookies today.I mixed and baked and frosted all morning and part of the afternoon.The plan was to mix and roll them out tomorrow.I made more for another 8doz. tomorrow but now my back and leg muscles are cramped so much from overdoing that I don't know what to do with all that dough tomorrow.
    I need my head examined.I'm not cooking for dinner tonight or tomorrow so maybe I can recoop some of that energy.
    I had to run out for more flour and sprinkes.Those things last for yrs. and yrs. but mine finally ran out.Expensive too.Two of the baby toys came in today.Three toddlers in the family and I got them all the same toy.I send grand-daughters stuff right to their house in Fla. and daughter wraps them for me.Gift cards for everybody else so I'm done.