Yes indeedy, you do have a great husband.

Know what I like about my Alan?? When he said "let's go out to breakfast"

He doesn't have to ask me twice. lol

Glad your feeling okay.

Melody

Roxie
 

I stopped by to check on you,oh ouch ,sorry got a brain freeze
from my smootie,well looks like your ok. I just hate nurses coming to the
house,they should send housekeepers. :) Sue

HI!! Well I'm on another new pain med. It's a type of Darvocet but has lower amount of tylenol in it. It's brand new and none of the pharmacies have it in stock yet. So they are ordering it and it'll be ready tomorrow. I sure hope it works for me. So anyway.....I'll be taking one Lyrica in the morning and one at night. Then the new medicine 4 times a day and then if I have break thru pain I take the Hydrocodone. WHEW! How crazy!
Sue, now I'm craving a smoothy! LOL I'll have to have Mike get one and share it with me cause I can't eat all that sugar......but gosh it sure sounds good!!

Hi. Wow they are really changing your med's. Have you found any relief yet? I was thinking as I thought this med issue and the pharmacy not having it happened before but somtimes the doc can give you some samples till they get it. Enjoy your smoothie. I just had creamstone my fav icecream. The perfect day here for it. Hugs and take care.

OK IVIG'ers, I have a question. I had my infusion on Wed. afternoon. Thurs and Friday I felt a little wound up, but had a few hrs here and there when I had pain. Today I am SO tired I've literally slept all day. Today is the 3rd day since my infusion. Does this ever happen to you?
I have to go and pick up my new pain med at the pharmacy in a few min, they finally got it in, they had to special order it. I have my fingers crossed that this one works because I'm tired of the pain and tired of paying for meds that don't work for me :( I hope everyone is having a good pain day! I'm off to the pharmacy now! Take care!

HI Gina,
I asked my dr. if he had any samples of this medication and he said he didn't :( I just hope this one works for me.
Hope you are doing better.

New Type of Darvocet
 

Hi Roxie, I will be very interested in your evaluation of this new medication. My mother-in-law and my husband sometimes take Darvocet and I was not aware of a new type of it. I have also taken it in the past and still do on occasion. Does it have a different name or the same?

I hope this works for you. I have PN but it is only in my feet and has not progressed. When I read everyone's stories, I feel for each and every one of you and wish only the best for all.

Hi Roxie
 

Well went back to hospital yesterday and got home this morning,
looks like a every Thursday thing for awhile. They got to do a
chenical coma while they work on my leg, It's wreid can't remember
a thing they do. I hope the Pig skin keeps helping.
Darvocet,the new one my Dr. just got through doing a big Study on
the old one. There was a problem with a question about Alzeheimer's
and the old one, so i think that will be replaced by the new,all i know
is i liked Darvocet but she took off all of her patien't off about 2 yrs.
ago. She is ok with the new one, Bob is waiting for it as well.

I'm so glad you liked your nurse,and that worked out ok,they put somrthing
new on my leg so mine doesn't have to come every day anymore.yes
If your like me when i want to sleep,i can't then it hits me full blast. ha
Guess what i got 2 dozen Yellow Roses today,i couldn't figure who
they were from. I said well Bob you and your girls are so sweet. He said
i like you Sue but there not from me.. They were from the Dr. friend
my gosh is the man blind. :confused: . :) Sue

Hi Diana,
The new medication I'm on is called Balacet 325. I have trouble taking most pain meds so the dr. wanted me to try this one as it has lower amount of Tylenol in it. I have my fingers crossed that I'll be able to take it!

yep
 

Thats the med. i forgot to name it. Now it will work,it will work. Sue

Sue, How do you get the "My Mood" sign under your profilie name??? I like that!!

I haven't heard of the Balocet. Thanks for the info, Roxie. I sure hope it works for you. It must be hard being so sensitive to so many drugs. Maybe you could give the fentayl patch another try sometime to see if that was really what caused your reaction, or if it was your IVIG. I have been taking Darvon compound. It is like Darvocet only with no Tylenol at all in it. Tylenol doesn't even begin to touch my pain, so I figured why take it and stress my liver. So I asked for the Darvon compound which my best friend, who is a pharmacist, told me about. My doctor wasn't even aware that it came that way, but he looked it up and prescribed it for me. My pharmacist friend has some great ideas. I am trying something new now, seeing if methadone will work better for me that the fentanyl patch. I'll let everyone know how that works out. I think that if I can get the dosage worked out, it won't make me as sleepy as the fentanyl. There's no apparent reason why it should cause less sleepiness, but that's how it seems to work for me. We'll see if we can get it to work as well for my pain. I will be out of town next week, so it will be awhile before I can work on it with my doctor to get the dosage right.

Dakota,
I hope your new med works for you! You are right, it's very difficult for me being so sensitive to so many pain meds. I have the same problem with anesthesia. It's the pits! Besides that I waste so much money on all those meds that I end up not being able to take!
I might try the fentanyl patch again if this new pill doesn't work. So far tonight I seem to be doing ok........with no stomach burning YEAH!!!!!

OK Roxie? Do you mean
 

Ultracet 325?s They are a combo of analgesic and tylenol as follows:
http://www.ortho-mcneil.com/active/j...f;jsessionid=W

Essentially if I recall correctly is that it's a Percocet Plus Tylenol type combo that seems to work better for us sensitve folks...w/ less side effects. Appartently [tho they have no clue why] the tylenol seems to add an extra pain killing KICK to the percocet derivative with less [tho not total possible dependencies]...It's one I take to good effect, but I usually take it when I anticipate one of those 'overexertion' times that usually have pay-back. [ I try to bite a bullet inbetween, due to a what must be inherited fear of dependencies-even tho I am dependent on other meds?-go figger?]

I have to ask you to well ELABORATE about your current reactions - how much did you have of WHAT pre-meds? And then last week, Maybe your new pains are signs of healing? One has to hope? With IVIG, it's either going to essentially 'OVERRIDE your immune system after 3 months, and at least give you some relief and no further progression' or NONE at all, and then it's onto steroids or PP....not much else in the way of options truly..

I did feel immediately better at first, and then I wondered for a while when I'd had hospital infusions...I'd found they were switching infusion brands on me as one would change a channel...and not notifying the neuro or me, as is required by FEDERAL LAW. I've found that so far, the home service has been lots more consistent, but maybe I am lucky? I am due for my infusions next week, I feel as if I need them NOW!!!!! need I say more?
I do get a total 'bone ache' on occasion, I think it's related, but I've soo many other things happening--who knows? Certainly not my docs...so it's patch patch patch..
Hugs to you and getting thru this all. We do get thru it tho - j

HI J!
Good to hear from you tonight! Are you a night owl? I am learning to be since hubby has different work hrs.
The new med is Balacet 325.....sounds similar to what you mentioned tho. So far tonight I haven't had any bad side effects.....Hate to say that outloud! I'm just taking 1/2 pill 4 times a day right now.....trying to elude the bad effects I've gotten with everything else!
I don't know the type of IVIG I'm getting.....other than it says on my insurance forms "Non-Lyophilized (EG,Liquid) 500mg. I will my ask my nurse a brand name.
I think missing last week when I was running the temp wasn't good for me. I think that's why I had such a difficult time this week. I was very wired and yet tired that night after the infusion and the next day. I had some achiness on and off and then today I was totally wiped out and slept most of the day. I'm taking the new pain med....but still....I'm not in as much pain tonight as I usually am by this time of night. So I hope all that is a good sign. I hope next week I'll do better after the infusion. I don't know how I'm going to return to work on Aug. 20th......I'm very worried about that.

Hi I'm sorry your still having so many problems. I can so relate. Also to the med issue. For me I pay out of pocket for all meds my insurance doesn't cover so like Cymbalta is like 150 or something a month. That in combo with others adds up. So when I try a new med I just get a weeks worth to see if I can tolerate. Before this I could open a pharmacy with all the meds I have and its like flushing money I need down the toilet.
Shiney sue I never heard about the date. I was away.
The ivig ? I have been looking up info and I know different from the tunneled catheter I may get but what does it do exactly is it for auto immune issues the ivig? Does it fix the issue or is it for pain only?

Roxie

Just go up to the upper lef where it says: "Welcome Roxie, and look in that little box and you'll see a thing that says "My Mood". Just click on it. You can select a mood.

Be well
Melody

Hi Mel!, I guess you have to be a "senior member" to be able to do that Mood thing.......cause I don't have a place for mood up by my name :( How did you get to be a senior member?
Hope you and Alan are having a nice, restful Sat.!

I got the My Mood thing figured out. I had to log out and re log in to get it....YEAH! It's the little things in life............lol

Ah!!! I see your mood is BUZZED!!! Guess what happened to me today??

MY BRA FELL OFF IN THE LAUNDROMAT!!! Now you can pick yourself off of the floor after you laugh your butt off!!!

You know a few weeks ago, when I created my "front closing bras"??. I took some bras, cut them apart in the front, reattached some extenders, using plain old needle and thread (SHOULD HAVE USED A SEWING MACHINE). I've been wearing my front closing bras for a few weeks now. No problem.

So Alan comes home from his nighttime security guard thing. We meet up in Dunkin Donuts, for our Saturday Morning breakfast date, we go home, I put a brand new wet dressing on his foot ulcer, he goes to sleep, I go out and do the laundry.

Well!!!! I'm in the laundromat, when I feel something off about the front of my body. I notice I have 4 boobs, instead of the usual 2. I have no idea why this is so. I just got finished putting the clothes in the dryer and all of a sudden it hits me, THE FRONT OF MY BRA OPENED UP. That's why I have 4 boobs. So I am wearing a brassiere that is not fastened in the front, and on the left side of my body is the left cup, then you have my two breasts, then on the right side of my right breast, is the right cup. So I have 4 breasts.
I had no idea what to do, because I can't reach around to the back of my body (I have a frozen shoulder),to unfasten (where on earth would I do this anyway, I'm in the middle of a laundromat). So I'm just holding my hands in front of my upper portion of my body, hoping no one notices I have four breasts.

So I thought about approaching some woman and asking "can you please discreetly unfashion my bra from the back", but everybody there is chinese and they don't speak english, and no amout of sign language is going to translate that. And even though I can speak 5 languages, chinese, unfortunately is not one of them.

So I just sat down and waited. And thought. Then I sneaked into the back of the laundromat, hid behind some machines, pulled down my bra and turned it around and unfastened it. Did it in 2 seconds. And because I'm in a laundromat, no one thought it odd for me to be walking back to my pushcart, carrying a brassiere.

I am now waiting on a shipment of two front closing bras that I purchased from Carold Wright. I hope they come soon.

Can't afford to go out with 4 breasts any more.

lol
Melody

P.S. While I was coming home from the laundromat, I found a 99 cent store that sold the crocs, They upped the price by a dollar. I bought Bright Green, and Hot Pink. I cannot wait for the expression on Alan's face tomorrow, when I wear a green skirt, and green crocs.

OMG Mel! What a predicament to be in! LOL I'm glad you got everything taken care of! LOL I hope you get your new bras soon so you don't have that probably again!
When I was 18 and dating my first husband (the idiot!) we were walking in the parking at Walmart when all of a sudden the slip under my skirt just hit the ground! The elastic gave way and down it went! I was SO embarrassed! SO I just bent over....stepped out of the slip and grabbed it up and put in in my purse! lol Luckily my skirt was a dark one that you couldn't see through! LOL I'll bet men have never had to go through so much in their lives! LOL

Oh you are so funny. That happened to me when I was young. I had a half slip (I never wore full slips way back then), so the elastic must have broke, or whatever the hell happened. I was in the street, walking to the subway, when I felt the slip falling to the ground.

I just stepped over it, went down into the subway and went to work. I was mortified. But not as mortified as when I had 4 breasts. Believe it!!!

lol
Melody
P.S. It's fun to talk to you. Want to hear something funny. My friend who is 63 years old just learned how to use her computer. I was just on the phone with her and teaching her how to put a web address into her browser so she can go to splenda.com. We are both diabetics.
So first she asks me "what's a browser". After going nuts with her, she finally found where to put splenda.com. Only she got some lighting company. I kept saying. "I'm at Splenda.com", where are you?" and she said "I don't know but it keeps taking me to a lighting company". That's when I asked her what she was typing in and she spelled it out for me. SPLENDOR.COM

PULLLLEEEEEZZZE lol

The mood signs,,,
 

Gee Thanks, Melody - I too was wondering how to get the Mood signs. What fun!

Shirley H.

Mel
 

I was in Mn. a year ago,and for once everybody was together. We
were at a really fun Coffee house,and something around the boob level
just didn't feel right. And all of those brats of mine were just smiling
to much. But i thought i had a lite jacket on i would be ok until we got
to the Van. Anyway the place was packed so i wasn't going to
risk yanking away at anything.

We finally got outside,and the whole gang yells FAMILY PICTURE. And
sweet looking gentleman offers to take it. I figure if i keep my arms together
across that area i would ok. I was in my wheelchair,so the kids had to
gather real close some just behind,some bent over and everybody smiling
and oh just so happy. So when the man said smile my 2 sons grabbed
both my arms, each one was kissing a hand.. Well we looked so happy
and here i am now on there websites,with the 4 boob look. Comments
oh they got plenty. I also lost a slip but it was the can-can type
in high Junior Highschool and i still get e-mails from the class of 64.
It was funny now and i guess it was funny then,i just kept walking and
kicking. Ah what we do for beauty. Roxie did you say you were going
back to work,or am i mixed up again???:confused: :D Sue

My husband has taught his grandfather (who turns 92 tomorrow!) to use a computer. He loves it! He emails and looks up stuff online. The problem is.....he's a tinker....he loves to go into the settings just 'look around' and he'll end up clicking on something that shouldn't be clicked and then his computer won't work. Then he calls Mike in to figure out the problem. It just drives Mike crazy when he does that! He tells him "Dad (he's always called him Dad even tho he's his grandfather) don't click on anything cause you don't know what you're clicking on! LOL Of course......that doesn't stop him! LOL We're just lucky he is still able to do such things at his age. He still drives too! Though Texas just pasted a new law that those over 85 yrs of age has to go in for an eye test and driving test in Sept. and then every year there after. We're afraid he won't be able to pass it and that's going to cause major depression for him. He enjoys being able to go to the store or the dr. on his own still. :(

Ah, we women and our boobs!!!

lol

Mel

HI Sue,
Well school starts for me Aug. 20th. So I'm not sure if I'm going back or stay on sick leave for a few more weeks. Guess it'll decide on if I get the pain under control. Right now all I want to do is sleep from the pain meds.....but they are working some and not making my stomach burn like crazy like the other stuff did!
That story is soooooo funny about your kids grabbing your arms! LOL LOL Aren't kids just wonderful! LOL My son just turned 32 on Thurs.......Gees did that ever make me feel old!!!

HI Shirley! I love the Mood signs too! What a cool idea!!!

Roxie:

Your husband's grandpa is 92 and uses a computer.

Glory Be. There just might be hope for my Aunt who is 83. Don't think so, but really!!!!, the guy is 92 and he uses a computer and drives. Bet that's what keeps him young.

I can't imagine what I'll look like or think like when I'm 92. Hope I even get to be 92!!!!!!

Imagine me in my pink crocks, a hot pink blouse and hot pink skirt. And a brassiere that works!!!!

lol
Mel

Everybody
 

Roxie just think it through,and you will decide what to do. Yep my sons
one be 35 in Nov., My yougest will be 30 Aug. !2th and my daugter is
31 there all married to sweetie's the same age. And they all love
that picture far to much. Yep Mel we really do have issues.
Bob likes using the computer as well,he just turned 79, and aways
worries about the driving test,but his girls take him everywhere.

You know when i was in the hospital Thursday there was a 29 yr.
mother of 4,who was put on the heart transplant list at Barnes Jewish,
hospital in St. Louis..she is the nurse of the Cardiologist,i have been
dating..Wow what a road ahead of her and her family. Her 4 and 5 yr.
and little old me,took turns seeing how many Med. Stu. we could run
down in my Electric Wheelchair. I know my life is hard right now,buy my
Card. Dr. friend knew what he was doing when she became my roomate
if only for a night..We talked all night and i'm glad she has a good
attitude,sometimes PN doesn't seem so bad. Hi Daniella,yep i'm
friends with a DR. and he's cute,very cute. :cool: as well.. Sue

Oh my Aunt is 91 and i just love her, she doesn't worry about anything,
although i think she's got a crush on Bob. She also said i just have to
cll her because she believes conputers, are the leading cause of blindness.

Mel, Maybe we can hook your aunt up with my husband's grandfather? They could be email buddies! LOL He's been married twice....both wives got cancer and passed away. He's been alone for over 10 yrs now. It was difficult for him to ask us to move in with and help him so much. He's needing more and more help now. Today we saw him laying on his bed.....which he NEVER does. If he's tired he lays in his recliner to take a nap. So Mike asked him what was wrong and he said he wasn't feeling well. So we took his blood pressure and it was really low. Also he just started taking Lyrica, which causes ya to be light headed for a few days when you wake up. So we got him some lunch and some med to raise his blood pressure back up. Now he's feeling better again. He really worries us sometimes.
So SUE.....how did you meet the dr. guy?? He's cute eh? got some pictures to share?? :)

Roxie
 

I've known him for 3 yrs,he was one of my Mothers Drs. But
after being a nurse for so many years,i dicided no Drs.
I'll have to find one,a picture that is. I also never dated
anyone with Children,he has 2 but they live in Ca.,I still haven't
thought that through. My children said Mama i never thought you
would let a Dr. through the door. Than i reminded my oldest I
do everytime his wife walked though the door. The look on his
face was priceless. He likes doing what he does and the hospital,
but misses Ca. My husband and i lived in Mi,and Mo but owned
a Condo in Sherman Oaks Ca. for years. I don't think iI would
want to live there again,just to many people. How long were
you married to the idiot?? Sue

Sue,
Well I hope it works out for you and the dr. I'm for what ever makes ya happy! So you don't think you'd want to move back to CA. then? I can understand if it's like Texas.......too many people and terrible crime and traffic. The plus side of living in Texas is the warm weather...which I love!
I was married to the idiot for 17 VERY long years. We married when we were young and stupid and stayed married way to long. I should have divorced him years before I finally did. OH well...live and learn.
I married a few years after that to my 2nd husband. That's why I moved to Texas from Nebraska where I'm from. We were married for 7 yrs.....and that was long enough for me.
Then a cpl years later I met Mike online......and that was 5 yrs ago and we've been married for 3 yrs now. He's my soul mate. We both wish we'd met many years ago....but I wasn't in Texas back then. We do everything together and enjoy just being together. It's great! He's sat with me through so many dr. visits, tests and hospital procedures and surgeries since we've been together.....he's a fantastic guy!

Roxie:

My Aunt Sallie (65 years ago), ran away with the mailman. He was 42, her father's best friend, and he was a married man with 3 kids.

They fell madly in love. She was all of 17 at the time. I believe they ran away when she turned 18. Now this was in the old days when you didn't do that and you most certainly didn't run away with your father's best friend.
They ran way to Florida (from New York), and my grandfather put a hit out on them. Yeah, this is true. My Aunt actually wrote a document which stated "if anything happens to me or to Joe, it's my father who arranged this". I believe my grandfather was "connected" or something to that effect.

Well, it turned out that Joe was beating up my Aunt Sallie throughout their whole marriage. He died at age 70 something and she was very young. She began to live after that. And now she's 82 or 83 and goes to the purple hat society dinner things every month. She's a real hoot. She has a seizure disorder (they never called it epilepsy) and she took neurontin for many years. They took test after test, mri, cat scans, every test in the book. They never found out why she had seizures. Her last one was a few years ago when she was getting on a boat and she hit the floor and had two black eyes. She says "I never see them coming".

She stopped the neurontin some time ago and now she is not on anything.

Now my grandfather, now he's an interesting story. My grandma and my grandpa met in Sicily and it was like Romeo and Juliet. She was 13 and he was 19, and his family couldn't stand her. So they eloped to America. She bore him 10 children and then he left her and moved to a farm. He had 2 more wives. The second wife, kept calling him by her first husband's name which was Sam. I remember he would say 'my name is Sal, not Sam".

I used to laugh my head off. Oh those old stories.

Melody

Roxie Mel
 

The Dr. is really nice but ,don't want to marry or anything,but he's
nice. Mel isn't it funny yoy get to be our age those old stories mean
a lot. I grew up in Mi in a all Italian neighborhood. Oh boy there was
book in that neighborhood,so i believe it all. Roxie,you got your soulmate
now and that's what matters. You just had to find your way to him.
My neck and shoulder have been killing me,something new. I may be
going back to Mayo soon,Bob to,trying to get things done at same time.
I would like to work but isn't going to happen. I wish houses were selling.
I'm wishing to much...Sue

Mel, you certainly have a colorful family!!!! Your stories make me smile and laugh and that helps the pain fade. Roxie, are you a teacher? If so, what do you teach? I am going away tomorrow to a Folk School in North Carolina for a week. My husband teaches woodturning there and I am going to take a needlework class. My 5 year old daughter is going with us and taking a guitar class. It is a fun place to go and very relaxing, BUT THERE ARE NO INTERNET CONNECTIONS IN THE WHOLE PLACE!!! So I will be incommunicado for a week. But don't forget me! They don't have tv or even good cell phone reception. I can easily do without those. But my computer -- that hurts!! I will miss you guys.

Ooops! My daughter is 25 years old, not 5! Typo.

I love the old stories! Sounds like your grandfather was in the mob! lol Gosh your poor Grandmother with 10 kids! YIKES!
My grandparents were a hoot. They were 17 yrs apart in age. My grandmother was in an orphange when my Great grandmother (my grandfather's mother) hired her though the orphange to work as a maid in their home. My Grandmother met my grandfather while working. He was already married though. So he divorced after only being married for 2 yrs and started seeing my Grandmother.....tho she still was in the orphange. My grandmother would climb out the windows at the orphanage to go and see my Grandfather! She was a wild girl! lol She hid the engagement ring that my grandfather gave her so the headmaster of the ophanage wouldn't find it. Finally my Great grandmother signed for my Grandmother to get of the orphanage so my Grandfather could marry her! They had 5 kids....all born at home and my grandparents fought like cats and dogs! I never remember my Grandmother ever saying anything nice to my Grandfather. She never learned to drive so she was always stuck at home.

We'll miss you Dakota! It does sound like you'll have a good time though!
I work in special education..in a Life Skills classroom. This will be my 13th yr. in the district. I enjoy it.....but it's very demanding and since I got PN I have no energy and you have to have LOTS of energy when you work with kids with Autism. :(

Melody did I need that laugh. That was so funny about the bra. It reminds me of a girl in hs who had her skirt tucked into her underwear. Yours is not as bad but can you imagine being in hs and that happening.
My gramps is 84 and is a wild man. He drives a corvette goes to the ocean. He takes a million cruises and is always on the run. He is more active then me. I call him P.ditty when he drives his bentley and where is gaudy jewlery. Just picture a 84 year old jewish gramps with a big gold necklace,driving that car and let me tell you he is no slow poke like he thinks it says 85 when its 55.Oy vey!
Sue I'm so glad you like that guy. That is so cute even if its just a companion. I want that for my mom. She doesn't want to be married again but I would like her to find a good "friend". Not too young though.
To me all of you seem so young spirited I love it. I can only imagine if you were all pain free. You all must be fun mom's and dad's.