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Posted 5/26/2006 4:00 PM (GMT 0)

cool  Oh goodmoanin' all you busy partyin' fools! cool

Hope for all it's a beauty of a weekend. Yeah, ya know Ducky you're right...Camama, it's like when we see you now it like..."oooh there she is!".... tongue always on the lookout for my mama!  Do you get a 4 day weekend too?

Hey "el" that's cool.  scool Keyboard! I played the flute for 12 years.

Oh geesh, no way is this my own wedding! hah! I would not have a BIG PRODUCTION like this one. LOL.  tongue You all know what I mean...the "Scorsese 2 years in the making wedding!"  Am however the maid of honor. I do like my title very much!  Even the little responsibility I did have was too much.  But, my best friend...who truly is the sweetest person in the WORLD deserves every second of it.

I am looking forward to rockin' my dress! Which is pretty darn HOT for a bridesmaid dress. devil Look out Joey! My honey's gonna be in trouble. devil tee hee hee.

               ***Camama, Duck & "El" I wish you all a fantastic weekend*** 

Thank goodness I'm not going anywhere except Sunday. My honey's on vacation this week...so we'll be by the pool Monday (most likely with ice on my kness!)

Ciao!  Erin

 

Posted 5/26/2006 4:03 PM (GMT 0)
yeah  Oh, Ducky referenced my dancing.  If anyone would like a good laugh, I'll send ya some pics.  I tend to put on a performance @ every party. 

Last Saturday I did my best "CHICAGO".

For the wedding...I'm working on "THRILLER"  Although it's been a long time...I need to brush up on my moves. tongue

Gotta live it up.  Willing to pay the price for it too! 

Posted 5/28/2006 1:37 AM (GMT 0)

Hey everyone! THanks for asking about me Ducky and Erin! Makes me feel loved! tongue

I am still working, still going well. I'm still working on balancing everything, thank goodness it's only 24 hours a week! This past month has been rough, I'm on my 3rd run with some stomach bug....it's a little different each time I get it, but it's still a pain (oooooh! I almost said 'pain in the butt!' big pun! tongue  ) followed by a cold/sinus thing in between each bout. Strange....long as I can still function (no pneumonia!), I'm happy! The downer is I can't stomach plaquenil often and then I hurt....this all started when my liver started acting up and it must still be bad because my brain is not functioning properly. I'm actually getting a little scared......

My babies (yes, I call them that as well) are doing great! My daughter had open House on Thursday for her school and we did the rounds afterwards to meet all the 1st grade teachers! WOW! I had my son meet all the kindergarten teachers as well. <sniff!> They are getting so big! sad

No big plans this weekend. I have a 4-day weekend as well. Since I just started having this tummy thing again last night, I will probably keep close to home and low key!

Erin, take it easy dancing tomorrow! Yes, I'd love to see pics and hear stories!!!!! But, don't hurt yourself! Have a great time!!!!

Have a great weekend everyone!***

Posted 5/30/2006 4:16 PM (GMT 0)

How was everyone's holiday weekend?!  Mine was great.  I took off Friday, and I had yesterday off as a holiday, so I had a 4-day weekend overall.  I can't even begin to tell you what a difference that makes in how I feel physically!  When I feel better rested, I'm better all over.  My joints still hurt physically, but I can better handle it when I feel rested. 

I did my enbrel injection on Saturday--the effects started wearing off yesterday, and everyday I feel just a bit worse.  Is this in my head?  I haven't heard back from the insurance company yet regarding an increased dose of enbrel, but hopefully I'll hear something this week.  My rheumy, when I called his office, said he doesn't mind authorizing it, but again he was adamant that my insurance wouldn't cover the extra dose.  But I said, hey, it's worth a shot anyway (no pun intended). 

I saw an opthamologist for the first time on Friday.  I had to see one for plaquenil monitoring, as I started taking that a couple of months ago.  It is very fortuitous that I was forced to see an opthamologist as opposed to an optometrist.  I tried to get my primary to write me a referral to my regular optometrist.  He said he would only if my rheumy agreed with it and my rheumy refused.  So off I went to the opthamologist, and I was told that there certainly is the potential for plaquenil toxicity (which is why I went in the first place), but also that the opthamologist was very suspicious that I was developing glaucoma!!!!  Now, I've been told this by optometrists for years, but they never really explained why.  The last one who told me I was at risk for glaucoma also told me to go out and smoke as much marijuana as  I could :)  At least now, though, I know that a qualified medical doctor is going to monitor me closely for glaucoma so if it fully develops it will be caught early.  I have an optic nerve imaging test, in addition to the standard visual field test, set up for September.

On a different note, I just got back from our office gym.  I did the elliptical trainer for 20 minutes!  It doesn't seem like a very long time, but I'm so out of shape right now that I was physically exhausted--so much so that I couldn't hardly raise my arms--so I stopped.  I was going to do at least 30 minutes.  I guess the important thing, though, is that I actually did something. 

Erin, how was your wedding?  camama and Ducky, how are you guys feeling today? 

Elcamino

Posted 5/31/2006 1:24 AM (GMT 0)

Hey ElCamino, I can really hear the rest in your voice! You sound great, I know excatly what you mean about tolerating the pain better when rested.

We had a good but uneventful weekend. THe kids and I had 4 day weekends (well, my son 6 day!), my husband, luckily, had at least one day off so we did have a family day. Hung around here and bbq'd that night.  I was sick Fri night/Sat - but I think now it may have been a reaction to something I ate.

Congrats on the 20 minutes! I agree, it's better than nothing and certainly a good start!

Why are they saying you are at risk for glaucoma?

***

Posted 5/31/2006 1:38 AM (GMT 0)
hi everyone! tongue   i havent been online to send my greetings as my daughter had a severe allergic reaction to something on saturday and is still suferring from its effects as we speak.  she is doing a million times better but she too is on steroids, medrol pack and inhailer~ was on tons of benadryl but now will be on allegra. the doctor also gave us the epi pen as i was out....opps..... we dont know if she got some peanut product by mistake (she has allergy to this) or she also had a sting from something unkown so it has been a bad weekend for my baby, well maybe not a real baby as she is a teenager but to me my baby she will always be.  

 

i didnt read all the threads~ mainly because i didnt want to drop in others conversations but i do hope everyone is feeling well yeah and i think of all of you and how you help one another through the tough times which means so much because you understand the pain. 

 

me i have been good for the past week but today my body is saying you need to get some rest or i will hurt you more!  i havent really slept in days because my baby's airway was comprised and i sat up mostly watching her.  no regrets though, my body will take it.  well byes and hope all is doing well with everyone  ~* yalinda

 

 

Posted 5/31/2006 2:01 AM (GMT 0)

Hi Yalinda, I hope your baby is feeling better and is well SOON. Take care of yourself, her problem is becoming your problem now and you need rest to take care of her!

Join in any converstation at any time, "OUR thread is YOUR thread!" hee hee! tongue

**

Posted 5/31/2006 11:38 AM (GMT 0)

Yalinda,  it's good to hear from you, but bad to hear that your daughter had an allergic reaction.  It sounds quite scary.  My mother had severe asthma, and I saw many nasty asthma attacks--not nice.  I do hope she's doing better now and you figure out what she was exposed to that caused it.  I had heard that peanut allergies can be quite severe, but most kids tend to outgrow it.  You said your daughter was a teenager, yes? 

camama, they are saying I'm at risk for glaucoma because:  1) I'm very nearsighted; and 2) I have a very large right optic nerve.  When one optic nerve is larger than the other, the suspicion for early glaucoma is elevated.  I also have a lot of difficulty with reading, especially in low light and I have horrible night vision.  I've basically stopped driving at night unless I absolutely have to.  I do have normal IOP in both eyes, though.  Also, glaucoma doesn't run in my family, so I've got that going for me.  I think the optic imaging test he's going to do in September will give us a lot of information.  Sorry to hear you were sick--intestinal bug from something you ate?  HOw horrible!  Hope you're over it now.

Have a great day everyone!

Elcamino

Posted 5/31/2006 4:38 PM (GMT 0)
hi elcamino and ca mama thanks for the invite to the threads.

elcamino keep an eye on your glaucoma status, no pun intended :) glaucoma is the sneek theif of sight and if in you family line, like mine, we need to annually check our pressures and any changes in eye pain or vision should be checked. i hate that eye puff test myself but this latest doctor i have been seeing for my iritis checked my pressure without a puff? he had some new fangled machine that read my pressure with no puff? made me happy as i sit there in the chair ready to wince everytime they check me for glaucoma.

well i stopped home to check on my teenage baby had welts this morning. daddy's home with her today, but she is doing better now.. cant get an appointment until late june aat the allergist ugh hope these hives leave before then! yes teenagers .... 2..... some days can be interseting around here :)

well take care and hope everyone feels better, hahaha, sry for the laughter, but i do hope it atleast, cant hurt to hope...... i should have signed on the tin woman hahahaha need to oil the joints hahahaha ~* yalinda
Posted 5/31/2006 5:24 PM (GMT 0)

cool  hey ya'll!

Erin did not boogy down as much as i would have like to.  WHAT A LONG DAY SUNDAY! whoo...and HOT!  the wedding was absolutely beautiful.  i was however on the bowl @ the bride's house all morning.  mad argh! but alas, my best friend in the whole entire world had the BEST & MOST BEAUTIFUL day ever...and she deserved every second of it.

funny thing....she is now coined "J-Rod"  tongue (like A-Rod from the Yankees) both their names start with J and lasts are Rodrigues (z)? spelling?

but it was a labor of LOVE. half way through the actual ceremony i had to sit...couldn't stand throughout a 45 minute church. oy! and happily limped down the isle!  and yeah...I LOOKED SMOKIN'!  my honey was happy, he had a great time. he took a lot of pics.  be happy to email anyone some funny photos. (some are hysterical).

ugh...knees are like basketballs. sad shoulders cuhput!  everything is throbbing and severe pain!  and bride and groom are in Aruba....NO FAIR! lol.

Hi! yalinda.  {{{{{{{{{ big hug }}}}}}}} for your kiddie. peanut allergy? very serious.

Camama, Ducky & "El" so glad all had an alright weekend.  is it like boiling evrywhere in the US?  it's been 90 all week here in NJ!

take care all.  erin

Posted 5/31/2006 6:26 PM (GMT 0)

Yalinda,  I was so dreading the puff test, but my opthamologist didn't do that either!  Yay!!!!  He numbed my eyes with some eyedrops and then he touched them with some kind of machine.  It didn't hurt--I could feel the pressure but it was no different than putting in my contacts.  He said it measured my corneal thickness in addition to reading pressure.  Actually, it did 25 calculations in approximately 2 seconds.  Now I know why I needed to go to an opthamologist and not an optometrist.  My optometrist doesn't have access to fancy machines like that one.  I'll keep on top of the pressures--optometrist can actually measure that if I'm not scheduled to see the opthamologist within a year's time frame.  I talked to my father the other night, and even though both of my parents had absolutely horrible vision (my mother had some very weird things going on), glaucoma was not an issue for either one. 

I think the optic nerve imaging study I'm having done in September will be pretty cool too--also a brand new technology.

Erin, hon, I'm glad that you had a good time at the wedding.  I'm sure you're paying for it now!  I know how I feel when I have to stand for extended periods of time.  We had quite a hot weekend here as well--thank God for air conditioning, although normally I hate air conditioning because I get so cold.  AC has been known to precipitate a raynaud's attack. 

I'm in a carpool with 3 older gentlemen who like to keep the car like a meat locker.  ON days that I drive, I have to keep the AC up rather high.  I always try to point the vents away from me, but it still gets very very cold.  One time I drove for over an hour with solid white and numb fingers.  It took a good 2 hours for them to warm up once I reached work.

Yalinda, glad to hear your daughter is doing a bit better.

Elcamino

Posted 5/31/2006 11:05 PM (GMT 0)

Hey Erin, glad you are back! Glad it was fun, sorry you had so much throne time! tongue   WOuld love to see some photos - my email should be posted.

I have bad night vision as well, my father has problems with the wall of his eyes deteriorating, so his peripheral visiion is not great and very speckled. I know my grandma had cataracts, but I don't recall glaucoma. My Opthamologist also numbed my eyes (ewww!) and I was spared that AWFUL puff test as well - YEAH! I can never keep my eyes open for that. The optomistrist always had to wrestle them open.

Yalinda, call the allergist and say, "my daughter has had a SEVERE reaction and needs to be seen NOW" and hopefully they can squeeze you in asap.

**

Posted 6/1/2006 3:01 AM (GMT 0)

hi everyone and thanks for the (((hugs))) and support for my daughter tongue she is doing better on the allegra verses the benadryl atleast she is awake.  the hives have been "sleeping" since this afternoon and i hope they are gone!!!!!!!!!!!  morning will tell

camama  if they are still here monday i will push harder as my daughter did ask me what is she suppose to do til june 23rd... sleep and itch all day.  plus it is her big 8th grade dance this friday and i am having a huge confirmation party for her sunday so i hope she will be better confused .... also i hope you will be feeling better and dont worry about the math thing that is what calculators are for!  i know u will be ok just another curve in the road .... drive cautiously(sp?) (((HUGS)))) 4u!

erin  thanks for the hugs and right back at you (((HUGS))) sry you didnt totally rip the dance floor but i am certain you turned many a mans head your way!  if i get it right ur stomach is not the greatest? sry maybe some pepperment tea?   i am still drinking and soaking in my ode to pepperment!  i would love to see pics... i'll update my profile for email address

elcamino yes opthamologists are thespecialists with the big bucks toobuy the best equipment.... are you parents legally blind? 20/200 best corected both eyes   if so i could let you know about free services for them in your state to provide devices to increase independence..... like talking clocks etc....let me know if u need information... oh and (((hugs))) to u too!  i am a big hugger in these parts!

erin it sure is hot here too! 95+ since saturday and we never get that in may!  i think by now u all know with my sabres hype i live in the burbs of buffalo the snow capital of our nation ************************************************************************

i cannot believe the heat these days but i am not complaining at all!!!!!!

ducky i dont want to forget u either (((hugs))) 

well i need to get some rest to pace myself this week for the big party on sunday.... i dont want my body to go on strike before i get everything done and ready!!!!! having about 60 relatives over  i must be nuts!!!!!!!!!!!!!!!!!!!!!!!!  i hope the weather stays nice so everyone can be outdoors and not inside inspecting the dust bunnies that may have piled up this winter :)

goodnight everyone  ~*yalinda  ps i typed this 3 times because the forum wasnt accepting my login????  hope u get this i am not typing it again!!!!!!!! nono nor am i proof reading i am going to sleep!

Posted 6/1/2006 4:44 PM (GMT 0)
moanin' yalinda!

and goodmoanin' ya'll,

will do yalinda...i just sent out a load of photos.  am getting very apt @ this whole computer thang! (i'm not PC savvy) so the practice is good!

ugh...joints still swollen & painful & throbbing.  my mom said to my grandmother "It's gonna take her a week to recover from the wedding!" hah, she might be right! yeah, my gut isn't happy.

 

hey Ducky...where have ya been? you OK?

 

hope evreyone has an OK day.

hang in there all!

 

 

Posted 6/2/2006 12:35 AM (GMT 0)
devil  bad day feel horrible forgot how bad i can feel.... why 8 good days and now so bad! not complaining just feel like a truck hit me.  i know this may sound dumb but does weather effect this? to ill to look on line. barely made it through work and have slept ever since.  how am i gonna get ready for the party if i am like this? ugh!  ok  yalinda snap out of it  .... i'll be opk  hope everyone else is doing better?   well back to sleep  i MUST go.... ~*yalinda
Posted 6/2/2006 12:40 AM (GMT 0)

Yalinda,  hope you're feeling better in time for your party!  Hope your daughter is all better too.  You've had quite rough week, if you ask me.  I would think the stress from your daughter being so ill would be  enough to cause a flare for you.  I know exactly what you're talking about, though, about a truck hitting you.  That's exactly how I described it to my rheumatologist one time.  Fortunately, I don't usually feel like that more than 3 days in a row.  Hope your's last just today, and tomorrow is much better.  Get some rest.

Elcamino

Posted 6/3/2006 7:42 PM (GMT 0)
mad  me too, not well.  on the bowl, swollen knees, elbow & shoulders are out. bad fatigue.  can't put ANY weight on left knee. sad this stinks.

here's to a better tomorrow.

Posted 6/3/2006 7:54 PM (GMT 0)
erin sry to hear your feelin bad too!!!  sad isn't there anything you can take to help you more.... i feel for you....   i too am struggling to stay awake and prepare for this party.... both my husband and eldest daughter are working today... it is pouring which means all the yard work is no longer needed and i need to clean in doors and i just cant seem to feel up to it...i keep saying i am gonna take a power nap but then find something else that needs to be done and lets face it i wont sleep if i know i need to wash floors and vacuum yet! my daughter who the party is for is helping her best but she still has hives..... i hope i can pull this off cuz it is day 3 of feeling not my best......

 

well here is a big (((((((((((hug)))))))))) for you in hopes you feel better soon....

 

i am trying to keep a positive attitude on this one tongue but i am so tired ... heres to making it a better day  ~*yalinda yeah

Posted 6/3/2006 10:50 PM (GMT 0)
sad  Good Moanin' Everybody....

 

sad  Sorry I haven't been around much... I feel like there are 1000 things going all at once and am having some "time management" issues... I feel like I never have enough time to do anything anymore... I promise I will be around more... the kids are out of school now, and I've had to transfer them to a different school, which now I don't have daycare for them, so I have been having to take them to work with me.  Thankfully my supervisors are VERY understanding and they don't mind.  My kids are very well behaved, so they're not much trouble, just more stressful for me to have them at work.  Weather has been HORRID here too... my body isn't happy at all... We had some wicked storms last night, I feel like I've been beat with a baseball bat... between the stress of the kids changing schools, trying to find daycare, work, a vacation that I don't want to go on, getting my step-daughter for the summer, arguing with the ex and his stupid new wife, the weather and this flare, I'm a wreck... but hey, it could be worse right? tongue    Trying to stay positive and stay focused.. but wanted to let you all know that even if I don't post everyday, I still come and read the posts...

 

I hope you all have a good weekend!  I'm ready for bed... redface

 

Duck

Posted 6/4/2006 2:07 AM (GMT 0)

Hey Erin, sorry life is so poopy these day! :-) I hope you feel better soon!

Yalinda, take it easy -remember, you are just going to have to clean again once everyone is gone. Asses the house, see what HAS to be done and what really doesn't.  Take short cuts when you can. Take that power nap you need!!!! It'll (God willing) refresh you enough to tackle things a little better. If it helps, make a list before you lie down so you get it off your mind and won't think about it and can rest 100%.  Also, with all that is going on, this might be a situation where spending the money and hiring cleaning help is necessary.

Ducky, I've missed you. Glad to hear from you.  I, too, have been angry at myself for poor time management - I can really releate! It's been on my mind daily that I better figure out my life and get some organization in my life soon or else. But, back to you, you sound really overloaded (as well as Yalinda right now!) - slow down before your overdrive breaks and you crash big time.

I hope you get a good night's rest. Take care,

***

Posted 6/4/2006 7:36 PM (GMT 0)
moanin ya'll,

 

well, the bowel revolution stopped.  thank the Lord.  knees are a bit better but still bad enough.  need to get them injected friday.  yuck.  i hate that, but i've been putting it off for months...but it's getting to a point where i can't put weight on my knees to walk. so, rheummy will suck out the fluid & pump in the steroids. oh joy.

thanks for all the good thoughts. yalinda, i'm on EVERYTHING that can help me...just when the inflammation gets bad...it gets bad; and then i have to get them drained and get steroids into the joints.

going to be a vegetable for the rest of the day! :-)

perhaps have a few margaritas to kick off the summer!

ciao scool

Posted 6/5/2006 4:55 AM (GMT 0)

Erin, you better make those VIRTUAL margaritas, baby! Lest you wind up on the can for yet another week! nono

**

Posted 6/5/2006 11:07 AM (GMT 0)
hi everyone.... lets sing now "the parties over... for me and my friends... lalalala..." ok i am tired and wierd sorry..... well i made it thanks to the help of family and friends. got rough towards the end but everyone kicked in ....

i go to the pulmonary doctor this morning to see what he thinks of my spots.... feeling like a dalmation.... boy i need sleep..... and no i was a good girl no drinks last night..... i made non alcoholic daquiries and margaritias and forgot to pull them out of the freezer! have a virtual one on me erin and camama!

well i got to drag my old tired half working body to start and get ready now it will probably take a bit as the legs and everything else is not fully working here..... lata *~ yalinda
Posted 6/5/2006 11:36 AM (GMT 0)
Everyone has had such a busy week! 

Erin, glad to hear that your bowels have stopped revolting.  Has the humira helped you at all with that?

Camama, Ducky, and Yalinda, you guys are incredibly busy.  Time for a rest--or a tropical island vacation (wouldn't that be nice?).

My weekend was so-so.  I take my enbrel injection on Saturday mornings, so I typically wake up feeling like I've been hit by a truck.  I've been keeping very close track of how my pain is on a daily basis (I actually write down ratings on a scale of 1-5), and when I graph it (yes, I'm a data nerd) I honestly don't know if the enbrel is doing as much as it should do.  I so want it to work, and I'm sure it's doing something, but it gets discouraging when it's been over 3 months (6 months on the tnf-inhibitors overall) and I'm still not getting the clinical response I should be getting. 

On a positive note, I did my first keyboard solo in a rock tune Saturday night!  I was so excited--it was great.  Really, it wasn't that big a deal to the people listening, but I've been a closet pianist for years, and I have a great deal of performance anxiety so for me to do a solo is quite out of character.  I also started playing jazz standards again with my husband (he plays bass).  We had both forgotten how much fun that is, and it's nice to have something in common with him (in addition to the girls of course). 

Erin--you should start playing flute again.  You could join our band and make it a trio :)

I hope everyone has the best week!

Elcamino

Posted 6/5/2006 1:17 PM (GMT 0)
cool  good moanin' ya'll,

you know, once Sgt. Colon stops his warfare...i'm pretty OK with drinking a few margaritas.  :-) When the "D" stops i'm good to go.  easier to drink liquids anyway than eat solids, so it works to my advantage...and they never made my GI problems worse. THANK GOD! :-) Yalinda, Ducky, Camama, & "El" take it easy.  it does seem like everyone is super busy.

you know elcamino, when i started the TNF's i didn't know i had Crohns...just had RA.  but once 2 years ago, i went off of the Enbrel for about 2 months and BAM...that's when i had to go to a GI!  my intestines went LOCO!  eyes diarrhea, cramps, blood, mucus  devil ...the whole 9.  so, the TNFs were indeed controlling the Crohns without me even knowing it. tongue so YEAH...in a way i am WAY BETTER ON THE TNFS than OFF regarding IBD. then again, all of those icky GI symptoms like the mucus, pain, blood and "D" come back when things act up. i do KNOW they've helped because most of the major problems arein the small intestines, and i wasn't absorbing anything; so i'm not 80 lbs anymore @ a whopping 95! so i know that something has helped.

knees are better than yesterday, back is still super painful. ugh...i hate joint injections, but gotta do it. so that's friday.

had a fantastic @ home vacation with my honey this week.  all of my plants are in the ground & i finally made my garden i've been wanting for the past 3 years! HOORAH!

have a HAPPY DAY.  erin 

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