Lupus Foundation of America - Women's Issues http://ft003159.fusetalkcommunity.com/index.cfm?forumid=1 FuseTalk Hosting Executive Plan Frequent UTI's http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9858 2010-09-06T23:14:44 -05.00 emeralddragonfly 1
What is the deal?

Nothing really different in my life other than this illness.

Anyone got an insight for me?

Anyone else suffering the same?

I take cranberry supplements now 3 times a day to try to help ward them off...
it's not working.

Thanks,
Jennifer]]> I can not wait until http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9805 2010-09-03T18:43:31 -05.00 carebear788 6 Wednesday when I go talk to my gyn about doing a hysterectomy and oopherectomy today I had severe pelvic pain where I was curled up in a ball and couldn't move for about twenty to thirty minutes then it lightened up for about a minute then came back for about five minutes then lightned up for about an hour and now it is pretty bad not severe like that though but usually every day it gets like that and if not during the day then at night so I am hoping when I talk to her about it that she will say yes and she will have an opening the following week please pray or keep your fingers crossed whatever you do that she will agree to it and have an opening the following week for the surgery thanks

]]> Dr. think it maybe a false possitive. http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9772 2010-09-01T22:25:46 -05.00 peaches35 5 Well I had to take my biopsy today. Which hurted a little hell a good bit. He put the vinegar and nothing happen. It didn't turn white in there at all nothing. So he told me he will just take the biopsy anyway. Which he said he cut off four corners and scrape the middle. What gets me is he shows me this furry ball looking thing that looks like a powder puff. And said you see these two white strings. In the morning I want you to pull on the strings and get this out. I am thinking in the morning it look big as hell. He send it up there while he still have the duck bill in ( thats what I called them). And pull the duck bill out I can not tell its in there but the thought of it ewwwwwww. Now I feel a little pressure like i need to take out an tampon. I ask him what it is for he said it helps stop the bleeding up in there. OK I am lost a powder puff helps with the you know what .... He said I can call back next week and see what my tests says. Oh yeah he will be on vacation. So I guess the nurse will tell me whatever. He said if it comes back something he will sit up visits for me.

]]> I called today and made an appointment http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9734 2010-08-30T17:56:02 -05.00 carebear788 3 with my gyn to talk about a hysterectomy with removal of both ovaries and to talk about the reason I want to have the surgery done which is the pelvic pain everyday keeps getting worse and worse and a couple days ago I was in one spot and the pain was so bad couldn't move for about ten minutes

]]> Worried about my future http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9729 2010-08-30T12:26:49 -05.00 helmore 6 Ladies (and any men who may be brave enough to stick around),

I've got a whole host of issues going on right now, and I'm dealing with serious fatigue from chronic Epstein Barr plus the usual joint pain/swelling, sun sensitivity, etc.

My boyfriend recently had "the talk" with my dad (I'm not supposed to know but a little birdie told me...) and is about to propose. However, I've had a pretty bad month, and he's understandably worried about my ability to cope with a family in the future. We know we want kids, and I own my own business, so he is concerned I won't be able to handle everything. As an example, we went to a theme park on Saturday and after standing up all day, walking around, riding rides, and being in the sun (thanks to my Neutrogena SPF 70 applied every hour no sunburn at least), I was so drained I could hardly form a complete sentence by the end of the day. And then I sat on the couch all day yesterday trying to feel human again. 

Since the doctor's haven't pinned down anything besides the EBV (positive RA, positive ANA, high sed rate, but can't get into rheumy til November), I'm not on any meds yet. From those of you who've been there, is there any hope that the meds will actually help me cope with life better? Especially the fatigue? My bf says he'll be with me through thick and thin, but I wish I could tell him, "Yes, once the doctors figure out what's wrong something will be able to help a little," or be honest with a, "No, there's not much they can do to make me less fatigued." 

Thanks!

]]> Please read http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9724 2010-08-29T23:06:14 -05.00 KellieH 6 As I stated before I've been thinking a lot about days gone by.  I find that I remember most when my sons were small.  It's not that I want to shrink them down to do it again, but things keep coming to mind that make me smile.  I thought I would share a couple.

First, when we were a young family and broke we would take drives to new parks outside of Dallas.  One Saturday we drove to Ferris, which had a very cool park.  Ferris is a very small town 30 minutes from Dallas with lots of open ranch land.  It was Spring, which didn't seem important at the time we left the house.  However, after driving past the second herd of horses our youngest son, Nathan, asked in his sweet little 5 year old voice "Mommy, why is that horse up on that other horse like that??"  My husband and I looked at each other opened mouthed, but before we could answer our 7 year old, Joshua, said "Nathan, you are such a baby!!  His feet are tired".  Neither my husband or I commented or asked Joshua how he knew the one "up on that other horse" was a "HE" :?

Second, Joshua was a social butter fly and actually still is.  I was forever getting notes and calls that he was up during a test helping the other children.  One morning at the breakfast table I got yet another "Oh Mommy, I need you to sign this note for Miss Curly" request.  After reading that he was in trouble for talking AGAIN, I yelled "Joshua Alan you will STOP talking in class or you will be grounded until you are THIRTY!!!"  He said "Mommy don't yell"  I yelled "I yell because I love you and care that you learn to take direction and control yourself so you can hold a job to support yourself and not spend the next 40 years living in the room you've been in since you were two!!".  Josh was 8 ... yes I know that was a bit harsh, but I really saw it happening!!  Nate was 6 and in frist grade and at the same breakfast table. Sideline:  Josh and Nate were as different, and still are, as night and day or Garfiled and Odie or Martin and Lewis.  Josh would come up with the caper, while Nate was the one saying "Oooo Your going to get in trouble" but still stood there to watch.    

I dropped the boys off at school, only to get yet another call by 10:00 that morning.  The principle said it was about Nathan, it was serious and I needed to come to the school right away.  I said "Dr Richardson, you must be mistaken.  It's Joshua".  She corrected me that it was Nathan "this time".  So, off to the school I went wondering what in the world Nathan could have done as he never got in trouble at school. 

I walked in to find my cute blonde little cherub smiling at me from a chair too big for him.  Dr Richardson asked me into her office while Nathan stayed outside.  I was told that Nathan had stood up in his chair and called Mrs. Green a bitch!!  I said "What??  No, not Nathan!!"  She replied that it was Nathan and that he asked Mrs. Green if she was going to call him mommy now.  I was asked if there was trouble in the home, if there was a new baby, or did I have a new boyfriend.  My answers were No, God No, and "I don't have a boyfriend because I believe the 11th commandment is 'Thou shalt not date while married to Nathan's FATHER".  

Nathan was called in, and he was still smiling.  He climbed into the chair next to me, and said "Hi Mommy".  I asked WHAT was he thinking to call Mrs. Green such a terrible name, because I thought he liked Mrs. Green.  He told me he did like her very much.  Annoyed I asked very pissed off "The WHY would you do such a thing ... Tell ME right now Nathan Daniel"  The smile left his face, he started to cry, and said "Because this morning you told Josh that you yelled at him because you love him, but you never yell at me".  Dr Richardson asked Nathan to go back out to the other room, then she burst into laughter asking if she could put that in the teacher's new letter that month.  "Sure" I said.

Thanks for letting me share

]]> Vanity... http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9720 2010-08-29T11:49:46 -05.00 MaryK 24
Although the fatigue is truly the worst thing, do you know WHY I (with the strong "encouragement" of my husband e.g. HE called and made that first appt) finally got serious about finding out what's wrong with me? It was the hair loss. It was me trying to figure out some way to style my formerly lush, thick, strong, and beautiful but now thin and lifeless hair. It was about the tearful and fearful feeling in the bathroom as great gobs of hair slid down my body when I rinsed, and then again as my comb filled up several times.

Now I'm spending quite a bit of time thinking about my vanity... It's not just the thin hair. It's the constant hives on my neck. It's the random hives that can come up anywhere and anytime and last anywhere from several hours to several weeks or more. It's summertime, who wants big nasty hives all over them?

Oh and the weight...the 20 pounds or more I've put on in the past several years. I don't feel like exercising, planning and executing a diet would take too much energy (unless someone comes up with a frozen pizza diet). I can hardly get the laundry done for my family and have to plan a day to focus on bringing it all upstairs...how will I ever get un-fat?!

Worst of all, I wonder if it was my vanity that brought all this on anyway. In 2007 I had a tummy tuck and silicone breast implants. Wouldn't that just be a huge kick in the pants? It's like the ultimate karma--perhaps if I hadn't been so vain, then I wouldn't be suffering so much now-particularly in so many outwardly physical ways.

Maybe it's time for me to take a hard look at WHY so much of what I think of myself is based on how I think I look.

Really, I would just like to go back to being my healthy vain self though... :'-(

I can't figure out how to feel. Denial that I might really have lupus and will for the rest of my life? Relief that I might be on the right track to finally feeling better and getting some semblance of my life back? Grief that this might really be how I feel forever? Anger and resentment at why me? Fear at the many many unknowns?

This is messed up, y'all...]]> Men. http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9718 2010-08-28T22:17:02 -05.00 Diva 15 Oh for the love.

20 some years together and we're in one of those funks. We can't say anything nice so we're just saying everything. And now he has these facial contortions when he's bitching, and that tells me he's really got a cob up his butt.

 That kind of funk.

My mother in law used to have a saying when she and her husband would argue. She said "Oh we're fine. We still have (relations).  We pass each other in the hall each morning and grunt at each other "F-you!" and then "NO! F-YOU!"

Yep, that's about right.

There is a certain peace that comes with age and the length of the 'sentence' youve served together....In my younger days I would have been in a puddle of tears, devasted. But....tonight when he walked out the door I said "oh hey wait, let me give you some money so you don't have to rush back."

What's love got to do with it.....

 

 

]]> "No really I'm fine" http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9717 2010-08-28T20:42:49 -05.00 KellieH 3 My dear friend, Lois, says she is putting that on my tumbstone because that has always been my answer even when awaiting 911 after having the first of three heart attacks ... No, really I'm fine.  But now I'm so scary depresse.  I'm not even sure how to put it in to words.  I hate to come here to complain, piss, and moan.  But no one else gets it!!  I can't seem to find the right verbiage to get across just how Lupus controls life now.  All I can think is how much I miss being me!!  I was witty, caring, loving, giving, fun, and way to stricked my boys would tell you.  Today I can only think of how it used to be while I sit again in my house like a hermit.   

My mind keeps going from 10 years old (1970) to my youngest son graduating from High School (1999), for some reason I am unable to remember anything before age 10 when I went to live with my grandparents.  The 70's, all would have to agree, had greatest music, cool baby doll swimsuits, neat hip hugger bell bottomed jeans in 100 different colors, and groovy shag haircuts.  My cousins and I spent long summer days at the public pool applying baby oil until we slid off the plastic lounge chairs.  If we weren't getting dark enough fast enough we added iodine to the baby oil, while putting lemon juice mixed with a little peroxide to lighten our hair.  Luckily I married a man that also loved sun, water, and sand.  As I got older I used more sun screen and more shade was required, but still enjoyed being by water, out at a festival, baseball game, or open air concert.  When my son's were young we loved parks, the "attack ducks" at White Rock, soccer,  bike rides, Six Flags, and water parks.  As our boys grew we loved watching their sporting events, band programs, Friday night footballs games ... yes, it's very true that football is very important in Texas.  Our oldest son was in the band (Tuba Section Captain) and our younger played right tackle on the varsity when only a freshman.  Every summer was a week at Caddo Lake on the boarder of Texas and Louisiana.  It is so beautiful with the cypress trees, spanish moss, orange trumpet plants, wild blue iris, and "herds" (as my youngest called them) of butterflies everywhere.  The butterflies on the lake roads were so thick in the trees, when they all flew away at once you'd think it was Fall and they were leafs.   Leisurely days following yet another lake road in a bout much to small for four, but we gladly made it work.  In the evening we cooked out, and sat on the dock while the boys fished with biscuit dough ... Catfish LOVE biscuit dough. 

Of course it was not all rainbows, flowers, and herds of butterflies.  On the 3 hour drive to/from Caddo I had to listen to my husband tell our oldest son to "Get Your Knees Out Of The Back Of My Seat!!" over and over.  With me saying "Joshua trade places with your brother" only to have Nathan cry out "I don't want to sit behind Dad cuz I have knees too!!"  Or one of the boys complaining that his brother was TOO close, was looking out his window because there was nothing good out their window, or someone was breathing too loud.  But loving the feeling on Monday morning of the tired that only comes from a well spent weekend.  The down side was I always knew I'd have some reaction to, what I didn't know then.  I'd have odd rashes, couldn't move my fingers, every joint hurt, and so on and on.  However, in a week or so I'd be better.  As our son's got older we included trips to Galveston and Barbados.  We, except my blonde Welsh husband, inherited olive skin from my Spanish Grandmother's so didn't have an issue with sunburn.  Regardless, to my son's irritation, I still insisted on applying and reapplying sunscreen.   

Sorry for the ramblings!!  Now, I'm far from witty, caring, loving, giving, fun, but I am still stricked my boys would tell you ... however, I don't have a lot of leverage now that they are married with children of their own.  It's no fun to ground people that WANT to be sent to their room for hours.  I am now reduced to seeing my granddaughters at the pool in pictures.  I have to tell them that I can't be out in the sun or heat.  They only see me in the confines of air conditioning.  I have had to cancel another February Barbados vacation.  I haven't been to Caddo Lake or camping in almost two years.  I can't do any of the things I loved about life!!  I work all week, so by the weekends are spent sick.  I try to get out, but the pain from the tumor in my spinal cord, stinging, and itching is just not worth the trouble.  Not to even mention the pain when walking, the head ache, splitting finger/toes, and trouble swallowing.  I know a lot of people have things MUCH worse than I do, but I can't seem to see anything outside my prairie dog hole right now. 

Ok, I'll stop piss'n and moan'n ... that's for the place to come when no one else gets it  

]]> I am going to talk to my gyn about a total hysterectomy and oopherectomy because http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9707 2010-08-27T23:57:07 -05.00 carebear788 1 ever since I had that problem with bleeding she told me I had a UTI and prescribed pyridum which I took the last dose today and ciproflaxin which tomorrow is my last day with that but the pelvic pain which I am 98% sure its from the endometriosis which is causing the pelvic pain but it is getting worse and worse every day like at eleven twenty six tonight it was so bad and i happen to just finished peeing and I couldn't get off the toilet and had to be out of the bathroom by eleven thirty so someone else could take a shower and I couldn't get up until eleven forty I did take a lortab at 11:30 and I have wanted to get a total hysterectomy and oopherectomy for years since I was 28 years old but I didn't have any kids still don't can't cause had a endometrial ablation which worked for two years so maybe this gyn will do it for me monday I am going to schedule an appointment for sometime after september 3 cause that is when I get paid to talk about doing those surgery and tell her why well going to try and sleep now

]]> I was wondering if anyone........... http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9693 2010-08-27T00:14:15 -05.00 carebear788 1 has Endometriosis and if you had a hysterectomy and oopherectomy mine is getting worse I am pretty sure even my gyn thinks its back and I decided to try the Lupron injection again which I am still waiting for first I tried it when I lived in new hampshire and I think it worked but can't remember but I have been leaning toward talking to her about a hysterectomy and oopherectomy and was wondering if those of you who had one think it was a good or bad decision I know everyone is different but just wanted your opinions thanks

]]> To Sharon http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9687 2010-08-26T21:40:28 -05.00 carebear788 6 I wanted to thank you for the information on the Pyridium apparantly you know more about it than my gyn's medical assistant my dad paid for that one and the Ciproflaxin was free the Pyridium turns my urine orange-red that is only a two day one and the Ciproflaxin is only three days thank God cause the Cipro makes me extremly nausaus I was down to three to four meds now I am back up to 6 meds and I am not counting the two I mentioned above that I picked up today and my health is not doing well either does anyone know how to handle extreme nausau while taking care of a 3 year old little boy we are babysitting from friday afternoon to sunday afternoon I finish the pyridum tomorrow (friday night) and the cipro saturday night thanks in advance

]]> my gyn medical assistant called today and http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9672 2010-08-25T22:11:52 -05.00 carebear788 4 said the culture they did on the urinalysis is not back yet but it does show a UTI  even know I just finished pencilin sunday I asked about that but I guess penicilin doesn't work for a UTI how can it and it must be pretty bad because the doctor wants me to take two antibiotics Ciprflaxin and peridium don't know if I spelled that second one right and I told the medical assistant I just spent my money on my copays for the prednisone that my primary just prescribed well I told her on prescriptions I just got filled and she reminded me that down here in florida Publix Gives away antibiotics to people that need them yes they are free she said she knows the ciproflaxin is and she said the peridium is also an antibiotic so it should be free and

my primary loaded me up on steroids and right now my pain is way down still have pain but right now it is not as bad as it was when I went this morning

]]> HPV!!! I am worried http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9669 2010-08-25T21:00:39 -05.00 peaches35 20 I had my pap smear done in July like every year clock work. Today i get a letter from gyn saying my test came back saying showing some atypical cells and subsequently cultured for high-risk hpv. The result was positive and they are wanting to do a colposcopic exam ( a small biopsy) Ok this is freaking me out. I have never had a possitive to the hpv before now. When I was 14 my cancer cell test came up possitive so at 15 I told my mom. The doctor gave me a freeze treatment. Is this anything like that or have a connection to it? Its been so long ago. Lately I have had a UTI and I keep and on again off again infection it can be my dye in my panties, pants, ivory soap its sad I can't use anything without getting a yest infection. Summer Eve forget it thats a trip to the gyn. Is this all of that a tell tell sign of something may been over look until now? What about my lupus meds will it make this worse??? Somebody please help. I look it up and found where people was talking about it but its just to fresh for me not to repost....

]]> just wanted to let you know that http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9648 2010-08-24T11:21:26 -05.00 carebear788 2 I did go to the lab this morning and do a urinalysis for my gyn and yesterday when I talked to her medical assistant she said that the gyn wanted me to do the urinalysis this morning and when they get the results they will call me and let me know if it is serious enough for me to go see the doctor right away or if it can wait until I get paid on september 3 if you ask me I am having too many problems at the moment I had 5 appointments this month and still have one more tomorrow and I hav 5 next month also because of everything I am going through well thats all

]]> I am having a problem http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9619 2010-08-22T21:33:46 -05.00 carebear788 5 on september 30, 2008 I had a endometrial ablation and since then I don't get my periods anymore which is great so I haven't bought pads in years but my pelvic pain keeps getting worse and worse and tonight when I went to the bathroom I noticed blood on my underwear and now I am bleeding which is not normal so I am going to call my gyn and let her know and either see how quick I can get the lupron shot or talk to her about a complete hysterectomy cause the pain is real bad and now I am bleeding vaginally and like I said it is not my period thanks for letting me vent and I am really glad we have this board to talk about things and problems like this

]]> Pregnancy success and lupus... http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9616 2010-08-22T15:45:35 -05.00 shanna 3 Hi, I have not been fully diagnosed with lupus yet but getting testing done for the second time. Iam so ready for an answer I have had a doc tell me he thinks I have and one say no positive neg test etc. I started getting these test because of symptoms and multiple miscarriages I have had three. I was wondering if any of you had successful pregnancy and what you had to do if anything to get there? The plan for me right now is to take heparin injections when I do conceive Iam now wondering if prednisone should be added. Iam feeling discouraged because I recently lost 50lbs and hate the idea of getting on prednisone.

 

Shanna

]]> Pregnant..now what? http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9589 2010-08-20T21:21:00 -05.00 jeepannabell 19 Hello ladies.  Just to touch base I had a positive dsDNA but neg ANA back in March.  I have had many sx of lupus but even more neuro type sx that looked a bit more like MS (though that was ruled out).  I am now waiting for a re-check on my labs which will be done Sept 7th (dr. wanted to wait a full 6 months).  My question is...will my new found pregnancy throw off the results?  I cannot bear the thought of going in there and now having everything come back normal when it really isn't...I've been going through this for over a year now and trust me, something is not right and many things point to lupus. 

Anyway, has anyone had dsDNA or ANA labs done while pregnant?  Do the hormones alter the lab results or anything?  On a side note...I have not felt this great in over a year!!  My body feels great since pretty much the day I've ovulated!  Is this weird for lupus?

Thanks!

]]> lupus and menapause http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9584 2010-08-20T15:42:44 -05.00 amytx 17 i am 38 years old and im no longer in premanapause i full blown menapause now and there wanting me to do hormone replacement therapy... i have had all the bloo dtests to rule out a clotting disorder so he wants me to use premarin cream since my hooha issss soooo dry and its shrinking.. (glad womens board) but i know men read too HAHA... anyways is hormones safe in lupus.. lupus has damaged so much that i have zippo estrogen in my body and thats why this nasty UTI wont go away because its deterioating my urethra where it wont keep bacteria out part of menapause,,

 

 

anyone on HRT or have you chose not too..

]]> Study: Racial disparities for age at time of cardiovascular events and cardiovascular death in SLE patients http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9572 2010-08-19T18:35:07 -05.00 Anthony 2

Racial disparities for age at time of cardiovascular events and cardiovascular death in SLE patients

forewarned is forearmed i always say…

Study abstract

Press release

]]> went to my gyn yesterday and............... http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9570 2010-08-19T17:58:16 -05.00 carebear788 7 ever since the exam my pelvic pain is a lot worse it was getting worse before I went yesterday was my annual but before yesterday I had gone for pelvic pain and she said she thinks the endometriosis is back and wanted to start me on Lupron injections which my old insurance would not cover but my new insurance does I have been waiting a long time for the Lupron I still don't have it they have to get the ok from my new insurance then it will be delivered to my house and then I have to call and make an appointment for them to inject it and now there is a pill you have to take with it I think the pill is everyday but

right now they are just thinking the endometriosis is back because you can't tell unless you have a laparascopy surgery and I had enough surgeries and would rather try the Lupron first and if that does not work hopefully it will but if it doesn't then I am going to ask her to do a total hysterectomy ovaries and all if she will a couple years ago I had a different gyn and was bleeding for almost three months straight eight times in three months and other not normal things were happening but even know I was 31 years old my old gyn would not do a hysterectomy because I didn't have any kids but she did a endometrial ablation even know after you have that you can't have kids and I forgot to tell my gyn that I have

now that I have pelvic pain that is worse and shooting pelvic pain and feels like something inside is about to pop if I still feel like that on monday I will call her any ideas on how to help my pelvic pain until I get the Lupron shot and make an appointment for them to give it to me

]]> Tai Chi Reported to Ease Fibromyalgia http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9567 2010-08-19T07:24:27 -05.00 Anthony 4 Tai Chi Reported to Ease Fibromyalgia

The ancient Chinese practice of tai chi may be effective as a therapy for fibromyalgia, according to a study published on Thursday in The New England Journal of Medicine.

NYT

]]> using Plaquenil during pregnancy http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9554 2010-08-18T11:57:51 -05.00 mandolyn 4 Hello all, I am 33 and recently diagnoised with Systematic Lupus.  I have very little symtoms (just some pain in my arm and chest wall) but all the blood tests have been positive for Lupus.  I am on Prednisone (10mg every other day) but the doctor wants me to start on Plaquenil.  However I also learned in the same week I am 7 weeks pregnany and my OB said no to using Plaquenil since the risk of eye problems in the baby.  So I am not sure what to do.  I have reasearched in the drug but there isn't too much info on use during pregnancy. I was wondering if anyone on here has used Plaquenil during pregnancy.  Thanks

]]> Ugly and Depressed http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9537 2010-08-17T13:04:37 -05.00 lvln2796 8 Good afternoon, I am new to this site. Not Lupus however, I was diagnosed in 2000 just before becoming pregnant with my 1st child. I am now 30 years old and have lived with this monster for amost 10 years. I have Lupus Sle with no major organ damage to date but having Pleurisy and my most common syptoms are extreme fatigue, fever, joint swelling, joint pain, lupus fog, headaches, extreme weight loss, loss of appetite, I get depressed at times, I have Raynoids Syndrome from time to time in my hands and feet, soars in my mouth and nose, hairloss, my sex drive is just about gone, rashes which as of lately have taken over my face, ears and head! I don't know what to do, It's making very insecure and it's so uncomfortable. I have seen a Dermatologist who seemed to know nothing about Lupus Rashes. They did a biopsy twice and the results my 4 yr old could have gave me. I was sent home on a steriod cream Elidel and it has done absolutely nothing! I am scheduled for a 2nd opinion on Sept. 13 with another Dermatologist. I know everyone's body is different but can anyone give me some advice? Any soaps or shampoos that may help? I'm open for suggestions! PLEASE HELP!

]]> Prednisone & Weight gain http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9534 2010-08-17T09:34:56 -05.00 Anthony 3

Prednisone & Weight gain

Usually the most dreaded of prednisone's side-effects, increased appetite and weight gain are seen to some degree by nearly all patients. The amount of weight gain varies from individual to individual. In addition to causing weight gain, prednisone also tends to redistribute body fat to places that are undesirable, particularly the face (moon face), back of the neck (buffalo hump), and abdomen. The higher the dose and the longer the treatment, the greater the effect. To some extent these changes can be minimized by exercise and the dietary changes described below.

Avoid salt
Most of us consume much more salt (sodium chloride) than our body needs. Normally, our kidneys keep our body in balance any excess salt is excreted in the urine. Prednisone causes sodium retention and potassium loss which may lead to fluid retention, weight gain, bloating and low blood potassium levels. In some patients, this can cause high blood pressure or worsen a pre-existing condition. We suggest a no-added salt diet and avoidance of highly salted pre-packaged convenience foods. Use fresh herbs whenever possible. Read food labels. Don't add salt to cooking and remove the salt shaker from your table. Instead use low-salt spices to add flavor to your meals. Ask your doctor about using salt-substitutes which are helpful since they contain extra potassium. It may be helpful to add high potassium foods such as bananas, citrus fruits, melons, and tomatoes to your diet. Be sure that your blood pressure and blood tests are checked regularly.

Avoid fat
Most Americans also eat too much fat. Fat has over twice the calories per gram than proteins and carbohydrates. By limiting the fat in your diet, you automatically reduce the calories and may lower your blood cholesterol at the same time. With the new food labels, it is easy these days to find low-fat items in your supermarket.

Avoid simple carbohydrates
Most foods contain some fat, protein, and carbohydrates. Carbohydrates (sugars and starches) can be either simple molecules or complex molecules. Avoid simple carbohydrates which are digested too quickly and leave you hungry. Complex carbohydrates are more satisfying since they must be broken down by the digestive process and are absorbed more slowly into your system. Simple carbohydrates are foods like candy, cakes, pies, white bread Complexwould include whole wheat bread, rice, beans, sweet potatoes, high fiber cereals, sugar-free candies.

Small frequent feedings
To combat increased hunger, snack frequently on low-calorie foods such as fruits, vegetables, low fat dairy products, low salt rice cakes, and sugar free candies. Instead of three large meals, eat smaller more frequent meals.

Eating out
When eating out, tell the waiter what you need. Don't be embarrassed or apologetic. Just ask directly for what you want. In our health conscious culture, most restaurants are used to special requests - just tip accordingly. When flying, call the airlines and request a low-fat low-salt meal in advance. They are quite prepared to help you. If you are in a situation where a special meal is not possible, don't panic. Eating salty high fat or sugary foods occasionally is not going to make much difference. Just enjoy them in moderation and be more careful the next day.

Source

]]> NutriSystems http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9528 2010-08-16T16:07:47 -05.00 Lupus444 11
DESPERATE!!! That damn Maria Osmond for looking so good!!!! LOL]]> I have.......................... http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9520 2010-08-15T20:39:44 -05.00 carebear788 1 been having really bad pelvic pain and about three to four months ago my gynecologists said that she thinks the endometriosis is back and ordered a lupron shot which my insurance approved and then denied because according to the insurance it was not medically neccesary  and my gyn's medical assistant was going to call them to let them know it is medically neccesary but I called her and told her not to call because I have new insurance that does cover most of it I will have to pay a copay and this new insurance also covers 1 annual and 1 pelvic exam a year for no copay and cardiac testing for no copay and a bunch of other appointments for no copays

]]> To all my girls, come to Diva..... http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9505 2010-08-13T20:08:02 -05.00 Diva 36 Ladies, you know why I have called you all in here? Because it is time for us to have a reality chat.

Now listen up!  I have had the supreme pleasure these past 2 years of getting to know you. Ive seen many of you since you first came on board, and then others who were my leader when I first got here. Not a day goes by that I don't think of you.

I cannot possibly explain how your kind words, watching your kind souls reach out over and over and over, and how I have laughed myself to tears at some of the crazy things that have gone on here...those moments have built me up and taught me much!

Being out in the work world I meet people and think to myself ....how can people just breeze through life and not care about those around them? I think this because my expectations of how people should treat each other has changed. Changed because of the genuine kindness, the selfelss sharing, praying, pulling, believing that each of you do so naturally. And that's just for US so I have to believe that you are touching many lives beyond these boards.

You are good, strong, really smart, beautiful people. Honestly, none of us will deny that of each other, right? So believe me when I tell you to believe that in yourself.

I don't know why we're sick and it sucks. Maybe God gave this to us because he knew we'd know what to do with it....Reach out and help others. Have a clear perspective of what is important. But what would we be missing if we hadn't met each other, all together, in this most personal way? Wow, I don't want to know. I heard a news story the other day that said having friends gives the same health benefits as a person who quits smoking. That's powerful and You are amazing.

So, stand up, buck up, chin up and LINE UP behind Jennifer. You're all getting your cape and tiara today.  It's long over due.

Your Diva loves you and won't let you forget it!

 

 

]]> Pregnancy tests http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9497 2010-08-13T04:14:58 -05.00 Bubbleswin 2 I took two tests one 5 days beffore n 2 days after I was supposed to expect the "time" both neg..... Still cramping, lower back pain, now I have a craving for milk.... I hate milk. HATE it. I have never drank a glass of milk unless chocolate since I had the choice to drink milk in my life. I get a blood test tomorrow, that will test within an hour and tell me how many weeks if I am.

Its tense down there, and everytime i feel I have to poop I dont. Until I actually feel comfortable in a place, whihc is abnormal for me. I have gas,  which is not a normal thing for me either. I don't know what to expect, but I am hoping tomorrow I will find out!!!!!!!

WIshing n hoping for the best!!!!!

]]> Insecure & Ugly http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9495 2010-08-12T23:00:17 -05.00 Jennifer 16 I love being able to post here, only you all understand. I am feeling extremely ugly lately and that's making me insecure. I have been a bigger girl for awhile now, but I would lose 20-30 lbs. etc..Well, I haven't lost any lately and seem to just gain. The hair loss and extra pounds have me feeling like crap. I seem to want to push my husband away, he's fit and health conscious and I feel terrible next to him. I ask him if he's embarrased to be out with me, etc.. I hate being like this, I know he loves me, he tells me all the time, brings me roses, candy and diet soda to work all the time. Anybody else going through this? I thought it would be great to go out and get new clothes, my hubby gave me his whole bonus to shop with. 5 hours and I only got two outfits, I hated the way everything looked. I'm really afraid of falling into depression..I hate this whole thing. Thanks for letting me vent, God knows I couldn't do it anywhere else...

]]> Wearing high heels http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9419 2010-08-08T11:18:39 -05.00 Anthony 2

in the LA Times the other day in case you missed it:

Wearing high heels might make you feel sexy and powerful, but think about the future health consequences

...blisters might not be the only downside to wearing high heels. In fact, the damage might be occurring higher up on the body – in the ankle, knee and hip, according to new research being presented later this month at the annual meeting of the American Society of Biomechanics.

Another key finding: The higher the heel, the greater the risk.

a no brainer really, but worth a reminder we thought

 

]]> Feeling tense, and comfortable with my hand there? http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9414 2010-08-08T02:42:27 -05.00 Bubbleswin 6 I have been vomitting and naseaus all week. I never usually get that sick from the flu but i was also having a flare up. The time of the month is expected to start this week or/and half. I was having really bad lower back pain, cramping and bloating for the passed week, but today and yesterday i have had none of those symptoms (that usually lead to my "time"). I also have never had such a sensative stomach. I've vomitted just from someone yelling at me. I dont know if its the lupus or the flu or a possible love baby.

When i was walking today, i noiced i put my hand on the area at my pant buckle and it felt comfortable and like a weird sense of safety just ran through me n felt like i was filled with light.

I dont have a clue to what any of this means so if anyone could possibley share ideas, opinions or and experiences that would be wonderful

Thank you.

]]> Periods http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9381 2010-08-05T13:03:25 -05.00 jlr92 3 ok my periods are ALWAYS irregular, i never know when they are coming....is tht a lupus thing?

]]> Baby stop growing three weeks ago!! http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9371 2010-08-04T19:34:32 -05.00 Karina23 15

I have some really bad news and sad, my heart to broken right now!! I went in to my OB appt yesterday and they did a second ultra sound  and they told me that the baby had stop growing about three weeks ago. I went in last week and I was 5 weeks, when I was support to be about 7 weeks! The doctor told me that was normal I might had ovulate late. So she told me to come back in a week which was yesterday. The baby was support to grow one cm a day and mine only grew 2 cm in 8 days and the yok had actually gotten a bit smaller. So now I have to get a D&C done that mean they will go in and take it out before I get an infection or something!! My heart is so broken 3 years I have been trying and nothing and now something happen and it doesn't come out how I wanted it. But I guess that life right!! I'm still very thank for my 4 year old son that god had blessed me with but I was just hoping that he would bless me with another!! I know know god done things for a reason, but it still hurts!! At least I know I can still get prego!!

Has anyone out there gotten an D&C done before is so what is it like?

]]> People just don't get it. http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9351 2010-08-03T18:58:15 -05.00 ctzsd 2 My role in my family and with friends has always been the organizer and caregiver.  It's okay.  It's who I am.  HOWEVER...I hate that people have come to expect it.  It has become so common that I don't think anyone even thinks about it anymore.  A family member sent an e-mail yesterday saying that she is coming in (from out of town) to "spend some time with me". But really what needs to happen is to get some shopping done and since I am the organizer...yup...I am expected to not only set up the shopping routine but open my home to her AND her 10 yr old twin grandchildren.  I said I couldn't because I have already made plans since I had no idea she was thinking about coming.  So I get a call from another family member today wondering if I am okay because she heard the story of me not letting my sister come to visit.  WTH?  I have told all of these people that I have been in a flare since APRIL?  Suddenly when I do not meet the needs of others they have questions?  People just don't get it!

Thank you for letting me vent! 

]]> Partial Hysterectomy??? http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9325 2010-08-02T01:07:50 -05.00 ali 9 If you have had one how did your cycle change, does it just stop?

Do you still get the emotional symptoms of pms? Did your sex drive change? Did you feel the same just - without your monthly or did you feel any menopause type symptoms?

Just wondering what the draw backs are minus not being able to house a baby, if there are any.

You guys are always so helpful & supportive it would be nice to hear from people here who have been through this.

Thanks!!!

]]> Ovarian cysts, endometriosis, early menopause http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9315 2010-07-31T03:56:22 -05.00 oneangrygnome 18
Articles supporting the information from above:
http://www.lupus.org/webmodule...late=print-article.htm

http://www.lupus.org/webmodule...rticleid=602&zoneid=76

http://www.lupus.org/webmodule...rticleid=602&zoneid=76]]> calcium supplements and heart disease http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9304 2010-07-30T12:57:58 -05.00 Bonbon 4 http://www.latimes.com/sns-hea...11155.story?track=rss

]]> New here and I'm pregnant and scared http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9299 2010-07-30T06:22:48 -05.00 coyote8061 11 I am not even sure where to start.  There is so much going on with the baby and me.  I am frustrated with all the docs, rhuematologists, neonatologist, ob/gyn, etc., etc.  Two weeks ago my rheumy said I needed to be delivered as soon as it was safe for baby.  In those two weeks I have gone from being able to care for my family and home to practically bed bound.  Almost passed out going to yet another doctor appointment.  No one thought this was a big deal and none of the docs returned my call and the doctor I was seeing said, through the nurse, she wouldn't deal with it.  (Lucky for her she was not my regular doctor or she would have been gone)  I feel like I have been labeled a hysterical over-reacter.  It is like my med files have been lable "do not return call."  I am at my physical and emotional limit.  I have a new baby coming that I can not take care of.  No one is willing to make the call that it time to get her out.  I am 35 weeks.  I feel it is safe.  I had a baby at 34 weeks and he did good.  (I fell and landed right on my stomach, not because of lupus).  They have even said she would be ok.  I just don't know if I am going to be ok when this is all done.  I am only being treated with prednisone.   I am frustrated and tired of crying all the time.  It seems I have new symptoms popping up every day.  I feel like no one is listening.  At this point I have no permanent damage but for how much longer?

]]> Need some Input!! http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9174 2010-07-21T13:22:29 -05.00 amethystchic 2 I haven't posted on here much but this morning I'm so needing some advice on what I should do...I know that this is a topic that has been discussed countless times and I've read every response I could find about it but I'm not satisfied....Here's my dilemma...I want to have another baby but i'm afraid! I was kinda lucky with my son (he's 2 now) because at the time I wasn't dx and was just starting to show symptoms of SLE. He was born premature at 30 wks due to IUGR and had to stay in NICU for a month, but only to gain weight...he didn't have to be on a vent or anything like that!! My pregnancy was fairly normal up until the 27th week or so when I started spilling large amts of protein and my blood pressure kinda skyrocketed!! I never had morning sickness or any real pains....

 

I'm just scared of what could happen...I've met with a high risk ob doctor and had a consultation so I know what I have to do as far as getting off certain meds (glad to say I've been off cellcept for 6wks..yay) and right now my dr's say my labs are really good! I just don't know what to do? Can anyone please tell me about your recent pregnancy experiences? I'm also so concerned about having a lil girl...I really don't ever want to give this crap to another human being...so were any of you ever concerned about that when you became pregnant?

 

I'm sorry for rambling but I really need some input on this...I've tried to talk to my husband but he says he's happy with whatever I decide..no help...and my mommy is totally against it....uggh..idk...PLEASE HELP!!!!

]]> The M word http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9163 2010-07-20T18:14:54 -05.00 Lupus444 5
I have been having spotting on and off throughout the month and it seems as though I have now skipped my period all together. I know the last three months my periods have been only lasting two days which is different for me. I had the thought that maybe this was due to restarting Methotrexate for some reason... I don't know I never saw any changes before on it.

I'm 42 and to be honest it's just hitting me hard because somehow in the back of my mind I still had this small and I mean very small glimmer of hope I was hanging onto that I would still have some kind of chance to have a baby... which I know down deep is probably totally absurd being the condition my disease is in and has been. I need my head examined!

Can Methotrexate effect your periods? I keep hoping it's just stress maybe... I have never missed my period.



]]> coloring your hair http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9138 2010-07-19T12:59:04 -05.00 emz44 5 Hi all, I need to have my hair colored. I have been coloring my hair for years. I wanted to ask my dr first if it was ok because having  lupus and taking plaquenil,prednisone, and plus my hair is falling out. I wasn't sure if i could. She said that it wasn't a good idea to have my whole head colored. She said to talk to my hairdresser and see if she could just color the areas that had just the gray hair. I was just wondering if any of you have had any problems with coloring your hair. I'm afraid if I color my hair and then I will end up having bald spot were my hair is falling out a lot. But I cant stand having gray hair at being only 44 years old. Any help would be very appreciated

thanks all

Missy

 

 

]]> OMG!! OMG http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9137 2010-07-19T11:50:09 -05.00 Karina23 8

I'm pregnant just found out this weekend!! I'm in shock cause I have been trying for about 4 years now!! It's still a bitter sweet situation, cause of some of my meds I'm on cellcept that if not a good thing to be on when pregrant!! I will be calling my doctor today!! Wish me luck I know I'm going to have to make a decision on what is the best thing to say but I will still be happy cause at least I know I still could get pregnant.

Has everyone out there gotten pregnant and everything truned out ok?

]]> How Do You Deal With Make-up? http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9134 2010-07-18T23:02:22 -05.00 SammyMay 18 Hi All,

I'm finding that the make-up I've always worn burns my face and makes it break out; has anyone else had this issue?  It's so bad I've not been wearing any make-up...  Is there an alternative out there that will not cause these issues?

 

Help!

]]> Pelvic Pain http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9105 2010-07-16T21:26:00 -05.00 BPfrmTN 1 UCLA Study http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9074 2010-07-15T12:36:08 -05.00 arisia 7 UCLA STUDY (very interesting and short)

A study worth sharing with friends both male and female:

A study conducted by UCLA's Department of Psychiatry has revealed that the kind of face a woman finds attractive on a man can differ depending on where she is in her menstrual cycle.

For example: if she is ovulating, she is attracted to men with rugged and masculine features.

However, if she is menstruating or menopausal, she tends to be more attracted to a man with duct tape over his mouth and a spear lodged in his chest with a bat up his ass while he is on fire.

No further studies are expected on this subject.





**Sorry for being off-topic**
]]> Cellcept and nipples hurting http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9070 2010-07-15T11:58:40 -05.00 Karina23 5

I have been taking cellcept for about a year now, they had lower my dose to 1500mg for about 5 month and now they put me back on 2000mg cause my blood work came out bad. But this worried thing is happening this time my nipples are hurting so bad, I was wondering if any of you have experienced something like this while taking cellcept or any other lupus med.

]]> Breast and Cervix Abnormalities and other questions? http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9068 2010-07-15T11:02:34 -05.00 latinaprincess7813 1 I went to the OBGYN yesterday for my annual visit and he told me that he felt abnormalities in my breast and in my cervix.  I usually get bumpy small whiteheads on my arms, chest, back, face etc...not often but enough to make me self conscious and he noticed that I was getting them on my left breast as well and during my pap smear (which has never abnormal before) he stated that I had an unhealthy cervix and that he noticed some bumps similar to the aforementioned as well.  He didn't go into further explanation as to what he meant by abnormalities just sent me for a mammogram and an ultrasound ASAP plus bloodwork and did a biopsy on me (blah...took two samples).

So I'm kinda freaking out a bit because I don't know if this could be all Lupus related?  Has this happened to anyone else before?  Feel kinda stupid for asking but not sure who else to ask since I'm getting vague answers right now from my doctor right now and not sure if my rheumy would know about this.  I'm still new to all of this.  I did read somewhere on the forum that cellcept makes you more prone to cancer?  I've been on cellcept for over a year now also since I have Lupus Nephritis and the nephrologist had taken me off of it several months ago along with a major drop in my prednisone which resulted me being in an ugly relapse and in the hospital.  But the rheumy put me back on them along with mobic and i've been feeling better but now all of sudden i've got other stuff going on so...is this all normal? 

Thnxs!

 

]]> Parasites and Lupus http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9036 2010-07-13T14:44:42 -05.00 svardal 6 My friend was just diagnosed with Lupus. She tends to drive around in her car barefoot. She had many tests and they concluded she has Lupus.

Ive been watching this show on TV called "monsters inside me." There was a girl that kept having flare ups, exaustion and rashes. The doctors did test and diagnosed her with Lupus. She was'nt satisfied with her diagnosis. It turned out through further testing,  she had parasites in her body. The parasites caused her auto-immune system to be impaired. Thus causing symptoms of Lupus. They ended up treating her and it cured her symptoms.

Is there any research that I may alert my friend about this?

]]> Need Advice: Vasectomy or not ??? http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=13&threadid=9008 2010-07-12T13:13:39 -05.00 osu4 4 I am almost 37 yrs old. My husband is almost 43 yrs old.  We have 2 boys ages 11 & 6 yrs old.  Both pregnancys I struggled with. I delivered both at 30 weeks. Almost lost my 1st one. I was on bed rest from 16 weeks on with both.  I also had 2 miscarriages in between these 2.  I am now diagnosed with sel lupus, sjogrens syndrome, mayalgia. I take Plaquenil 400mg daily.  The RA doc says its not recommended that I have any more kids- and I can't take birth control (I get sick, we have tried a bunch of different ones over the years) the RA doc says I get a tubal or my husband gets a vasectomy. Whats your thoughts? my husband has a vasectomy scheduled this week- do you think at our ages this is the right decision? are we too young? should we wait? is the doc right? would love to hear your thoughts since this is a very final thing to do.  Thanks

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