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Posted 5/29/2008 5:18 AM (GMT 0)

Weleetka said...
I'm in a tizzy about my Dr... I live in Arkansas but I have still been going to the Dr. in Tulsa that gave me the diagnosis...now that gas is so expensive, I'm really needing to find me a doctor closer to my town... that would be in Ft. Smith or Little Rock... I am from Oklahoma and I do get to go and see my Mom when I go to the Dr. but the expense is getting a bit much....Oh, I love my Dr. in Tulsa...

Weleetka, if you would like to email me, I may be able to help you.
Posted 5/29/2008 11:34 AM (GMT 0)
Hi Rosie:

Well, as I mentioned in a post of mine, I'm not doing to well. I'm in a huge flare, and I'm having issues with my GI track and stomach and then on top of it all I need a heart catherization. Oh joy, would anyone like to trade, lol. My daughter is almost done with her freshman year and it has kinda freaked me out. In three years my girl will be graduating from school, wow that's hard to picture.

I've still having issues with my MDS and it's still advancing. I'm still needing blood transfusions and I still haven't given totally up yet. My goal to is see Nikita walk across that stage and see her go on to college. Otherwise, that's pretty much all that's new with me. I'm looking for a new rheumy and hopefully I'll find one soon. Glad to hear most of you are doing well, keep up the good work on your health and I'm looking forward to going to Atlanta to meet up with you in June.

Take care,
Barbara
Posted 5/29/2008 1:42 PM (GMT 0)
Hi Everyone.  Recovering from a flare and medrol dose pack. Major internet problems so I'll leave it at this.  Love, Butterflake

Posted 5/29/2008 1:56 PM (GMT 0)
OK . . . I realize these are backwards . . . and I sure hope I didn't miss anyone. But I've really enjoyed this thread and seeing everyone's update in the same place. I hope EVERYONE will add their updates!!! Barbara . . . sending big hugs your way sis . . . I can't believe how much junk you are dealing with. Prayers and tea on the way!!! *sigh* I was hoping the workup with new docs would bring some encouraging news. Butterflake . . . sorry your having computer problems and a flare. I hope you'll be able to update us in a few days. Hopefully the dose pack will help. Bee . . . DO have that throat issue checked out. Your thyroid (TSH) can come back normal and you can still have autoimmune thyroid disease. But it could be glands or something else swelling in there. You don't want to ignore that area, because if thing get just a bit worse, it could really interfere or totally block your breathing. If you don't have an appointment in the next couple days . . . make one. or at least call your doctor and talk about it. We have so many weird symptoms and Sjogrens can cause some weird stuff too. Your Hike sounds like me! I've learned to stay put when I see or realize I'm in over my head. I have the others go on ahead w/o me and I rejoin them when they double back. Usually one of the group wants to stay back with me . . . and I've learned that usually means THAT person didn't want to do the whole thing either and they are happy to find a graceful way out. "My son told me one time . . . Mom, when a man asks you if you want to stop and rest, it often means, he needs a rest!!" Weleetka . . . Don't put this off. You were probably feeling better before because your meds were just right. Now they aren't enough. I know we feel like we are in remission and want to try a break from the meds . . but don't wait to see your doctor about going back to more meds . . . you just risk going into a real tailspin. You might have a LONG wait to get a new rheumy nearby . . . so think about making that first appointment . . . but keep the old rheumy until you've actually seen the new one and feel like you might be able to work with him/her. Just a thought. Leta . . . they are doing a REAL workup on you!!! Are you staying nearby the Clinic and going back and forth? Wow! I hope they get a great treatment plan for you. Okie . . . So glad the corn bags are helping. They're just like a big hug!! Sorry you are worse off again *sigh* . . . Maryanne . . . Summer off!! YEAH! Hopefully the docs can get things figures out for you. Bigsanfer . . . I totally missed that you are 15 years old!! ((((((((((Bigsanfer)))))))) So sorry you are having all this trouble while you are SO young. Ann . . . I hope the anti-d's make a big difference. I used them for several years and would go back on them in a heartbeat when/if I need them again. Ginny . . . *sigh* I hope your taper goes well and you have an uneventful summer. I know this is a super busy time for you!! Sunshine . .. Are you on other meds besides the anti-d?? HealingWell also has a forum for IBS, Chrohn's and Ulcerative Colites. If you haven't checked those out, it might be a good idea. These three mimic each other and its really important to try and figure out which you have. . . treatments can be really different. If you know some of the symptoms, it will help the GI doc with a good dx. Patty!!! Woooo hooo!! You were so sick for so long . . . its great you've been feeling better . . . and your pup sounds charming!! mygrljes . . . we'll hold our breath for two weeks with you while that insurance kicks in!! I hope you get lots of rest after that move!! Connie . . . glad you are able to do more now!! I use hotwax too . . just because it feels SO good!! (I don't have a huge problem with my hands . . more about dry skin . . and the hot paraffin really helps that too) . . . enjoy the pup!! Stacie . . . I hope you are taking folic acid with the MTX. It takes quite a bit. Lots of members get some relief from the nose/mouth sores with folic acid. Redrose . . . lots of healing to do after having a baby!! Continue healing, resting and enjoying your baby!! Hippie . . . I think you are having your colonoscopy as I type . . . I hope you do well. . . and I hope they can see what is causing your GI distress. Bill . . . you have done SO well after being SO terribly ill. I hope your muscles recover enough to continue shocking the doctors! Debbie . . . ughhh the GI issues . . .sorry. I hope the GI gets things figures out for you! It looks like a few of us have GI issue. Post in a new topic when you have your appointment! Tibobi . . YEAH!! Always great to get good updates! So encouraging! Thanks to all who have given their updates . . . EVERYONE who hasn't posted yet . . . we are all really nosy and want to see your post!! Blessings ALL!!!
Posted 5/29/2008 11:09 PM (GMT 0)

Rosie,bless your heart. I have been laying off the vicodin just using tylenol for pain but I don't know what I would do if I didn't have anything stronger if I needed it. I hope you can get somthing figured out soon for when you really need it. You shouldn't have to live in pain. I'm glad the sun isn't a huge issue this year. I hope it stays that way!

love ya

carol

Posted 5/30/2008 4:09 PM (GMT 0)
Great idea Rosie,

   We use to do this often awhile back and it helps keep track of everyone. It's good to hear from everyone.

   I have been having some annoying problems lately but hanging in there. I had a EGD/Colon done on the 19th and went down hill from there. The colon was okay, just some diverticulitis and he removed a polyp. The EGD showed gastritis and he did biopies. No answers yet on that.

    Anyway, since then my BP has been up and down, light-headed, balance off, get the shakes, temp up and down, HR up and down, headaches and neck pain. He ran a ton of blood work last friday and still don't have all the cultures back to rule out alot of things.

   He says I have autonomic dysfunction which my rheumy mentioned when I was having the seizures in 2005. From what I have read labs won't show autonomic dysfunction. So right now just waiting for all the results to come back, laying around taking it easy and very frustrated once again... confused .

   Take care and hope you and everyone else will start to feel better soon. You are all in my thoughts and prayers.

                                                 Love, Babs

Posted 5/31/2008 4:05 AM (GMT 0)
Hey Carol . . . no really bad pain right now. Just achy at times. :) So not a big deal at the moment. Thanks! ((((((( Babs)))))))) Would this be a neuro issue then??? I wonder if the prep got your body out of sync?? Sometimes it makes everything run smooth for a while. Sorry your having trouble again/still. I hope you'll keep us posted. YES its great seeing everyone's updates!! Come on everyone!! We only have about half of you!! Blessings!
Posted 5/31/2008 6:47 PM (GMT 0)
Hi Everybody!

Thanks for the nudge Rosie, I've been reading the forum but not replying lately. I had a very rough few months (my whole family did), but we had a wonderful trip to Myrtle Beach together at the beginning of the month and it did us all wonders. The trip was a gift from my in-laws who own a lot of time shares. What an amazing treat! I could even see the ocean from my bed! I made it down to the beach several times and the master bedroom suite had a whirlpool bath! Heaven!

My son, who has gone through some difficult times, is home with us again, which is such a relief. We had been so worried about him it really took a toll on us -- and of course he was the one having the REALLY rough time. The trip together has really made us all feel so grateful to be together again. He and my husband had a great time swimming in the ocean, pools and playing pool in the hotel rec room.

I had breast biopsies in April which came back negative thankfully. I feel like the family went through pure hell for a couple of months and the vacation turned everything around. Now I think I've just gone numb with relief and exhaustion. I've just been resting a lot and taking care of myself and husband and son the best I can. I am on new supplements, nasal spray glutathione and sublingual B12 which seem to be giving me more energy.

Thanks to everyone who checked in and especially to Rosie for always being here for us, encouraging us along when times get tough. Hugs to everyone.
Posted 6/1/2008 12:32 AM (GMT 0)
Rosie, yep I take folic acid everyday for mouth sores, been on it for a long time. It's the only thing that keeps them away.

Babs, I have been thinking about you and wondering how you were doing. Bless your heart, it's one thing after another isn't it? Take care of yourself, you are in my thoughts and prayers. Love ya!
Posted 6/1/2008 1:34 AM (GMT 0)
(((((((((( Harmony )))))))))) OH MY!! I'm glad you are on the other side of that scare!!! How nice that your vacation was so healing!! We have some great memories from a couple of beach trips. There really is something healing about the beach!! LOL as long as we don't sit in the sun!! Blessings!
Posted 6/1/2008 2:10 AM (GMT 0)
I'm doing OK. We had a very busy May, and it was a quite "flare-y" month for me because of it. I started myself back on plaquenil because in retrospect, I think it really did help make the flares less frequent. (I had taken myself off of it because of stomach issues. I'm going to try taking it at night like you guys suggested, to see if helps with the nausea.) I don't go back to the rheumy until June 26, so I have no idea what my bloodwork is looking like.

I am dreading tomorrow...we're going to my grandmother's family reunion. It's a three hour drive there and we turn right around after the event and drive back home. We have to leave the house at 8:00 a.m. So it's a very long day of traveling. I should be stiff as a board by tomorrow night! But, it means a lot to my grandmother and I've missed the past two reunions because of lupus, so...I'm going.

I like the idea of this thread...it's nice to read updates on everyone at once.

Posted 6/1/2008 3:30 AM (GMT 0)
AKKKKKKK!!! the dreaded car ride. That takes a toll on me too. I hope you can find ways to change position frequently. I've even tried lying on in the back seat. . . *sigh* I hope you do well!! Try some regular, intentional tense and release exercises for each part of your body. . . . it could help with circulation. Glad you are back on the plaquenil. I think each of us has tried getting off our meds . . . LOL. Blessings!
Posted 6/2/2008 5:28 AM (GMT 0)
GreetingsTo All! Great idea, Rosie! I have had much success with Arava. It hasn't caused me to lose any weight but I really haven't been trying, either! I do not seem to crave sugar as much, though, although I am still taking 7 mgs of prednisone daily.

I really notice that I feel better every month. My energy level has been noticeably improved. Hey, Rosie, I mopped my floors and did some heavy dusting and cleaned a few closets last week myself. Isn't that awesome?

My rheumy has me on Celebrex for inflammation and, also, Cymbalta for depression and to help with pain. The Cymbalta does seem to help with the last bit of pain that I was dealing with daily.

Anyway, I applied for a new princiapl position and I am one of two finalists! Wish me luck!

Audrey
Posted 6/3/2008 1:15 AM (GMT 0)
Great Audrey!! Its great to here how well you've been doing!! Soooooo I hope you'll keep us posted on the new position!!! Such tension until you find out!! I hope the job is yours if it will be a great fit!!! Keep us posted! Blessings!
Posted 6/3/2008 5:07 AM (GMT 0)
Hi all,

It's been quite some time since I've posted. I've just needed to go into lurker mode for a while. Two really great thing have happened since the first of the year: our insurance now includes the hospital and clinics where all of my original doctors practice so I'm back with them. Oh, did that feel good! I might have shared this already so forgive me if I'm repeating myself (the memory--the what?--is shot), my soc. sec. disability was approved on the first appeal. Not that I'm happy about not being well enough to work (I miss it tremendously) and I give all credit for the success of this appeal for the great attorney who handled it for me. In fact, it was Bill (Bisme) who recommended this atty. to me!

My neurologist is handling the appeal for IVIG infusions for me with our insurance company. I am so glad to be seeing him again! I never did have a good feeling about the other ones. I never did understand why they had a resident seeing me, reporting to his supervising MD and then the MD confirming the treatment plan (what plan?) for a very rare disease. Oh well, those days are over. So on the Hashimoto's encephalopathy front I'm not done any better and had some periods of being worse.

In Feb. I was neutropenic (nearly 0 white cells) with a raging thrush infection in my mouth and down my esophagus along with one nasty ulcer on my tongue. They wanted me in the hospital but I begged for one more day. If my counts didn't show a bit of improvement, I had to go in. Hooray--they started going up just in time so I avoided it! A couple of weeks of antibiotics and mouth stuff and numbing stuff for my mouth and I was good to go.

Scleroderma wise just a couple new things. I have "grown" a few more telecgiectasias (I'm sure that's not spelled right)on my face. They are red spots made up of broken blood vessels. I have become very good at wearing the mineral make up when I do wear make up that is! We found a med that really helps me with the GERD. That has helped so much. We also figured out through a bunch of tests, including the oh so fun colonoscopy (I reaacted like you did to that gross gross gross prep, hippi) that the sclero has caused slow motility in the small intestines which causes an overgrowth of bacteria. When symptoms dictate, I take an antibiotic; otherwise I take a daily probiotic.

Fatigue is still a major issue as it is for all of us. I have been anemic for a year now and that's not helping with the fatigue. My rheumie (first visit wth the "old" one) ran lots of labs including some to rule out causes for the anemia. If no particular cause, I guess we'll chalk it up to the good old vague anemia of chronic disease.

The other stuff is fine or I just can't remember right now. So we'll go with fine. Hey, let's go with good or even great. I like that the best. Oh, best news of all: grandchild #3 is due to arrive around the first week of August. Wish me daughter luck; her son was born 8 weeks early.

It's been really nice to catch up with everyone. Good idea, Rosie. Lots of positive, healing wishes for those who need them and 3 cheers for those who are doing well.

emmie
Posted 6/4/2008 12:11 AM (GMT 0)
(((((((( Emmie )))))))) SO MUCH to juggle, healthwise!! Wow you've got a lot of issues to deal with. So glad you posted sis . . . It's really good to hear from so many!! I hope the IVIG is a good med for you, when you finally get to try it. YEah!! Glad to hear that your SS came thru. Thanks for the update!! Blessings!
Posted 6/4/2008 7:59 PM (GMT 0)
Rosie, thank you for doing this link. It is great to know how everyone really is doing. I hope to post more later.

Leta
Posted 6/6/2008 12:00 AM (GMT 0)

Lets start with the good news.  My rheumy thinks I can start to taper methotrexate.  I got a promotion at my job and summer is finally here.

The not so hot news- I'm feeling really tired, my husband refuses to understand that I really need my exercise and rest.  My mother is mad at me for skipping out on our family reunion this Sunday because the mtx makes me so groggy the day after taking that I don't think I can stand to be in a car for 6 hours!  I'm not sure, but I think some of the pain is starting to creep back up on me from a reduced dose of mtx.

Other than that, I would say I'm doing fine.  As of my last rhuemy visit my tests are all coming back unchanged or better so my rhuemy is pleased with the results.  My hair is falling out less and I'm feeling better (trust me-this can be told by my normal appetite again).

Hope everyone else starts to feeling better.  I think about how cool it would be to have a Lupus support group in my area and to meet some of you on here.  Is anyone close to Madison or Milwaukee Wisconsin?

Posted 6/6/2008 12:21 AM (GMT 0)
IM DOIN OK 2DAY...MY PLATELETS ARE UP TO 120 AS OF TUESDAY....6 WEEKS AGO I WUZ AT 5...I AM BOUNCIN OFF THA WALLS CUZ IM ON 100 MGS OF PRED...AND I HAD DAY 3 OF A 5 DAY IVIG TREATMENT...BUT, I HAVE SEASON TICKETS TO THA ATLANTA DREAM AND THERE IS A GAME TOMORROW SO I HAVE THAT TO LOOK 4WARD TO...AND I WILL BE LAYIN ON MY COUCH IN 20 MINUTES OR SO READY TA WATCH PREGAME STUFF...ITS THA NBA PLAYOFFS BABY!!!!!!!!! NO BARAC/HILLARY TALK!!!!! LOL
LETS SEE, THAS about IT...OH, IM STILL LOOKIN 4 A JOB...GOT LAID OFF IN NOVEMBER FRUM HOME DEPOT....SO, IF ANY OF YALL KNOW OF ANY AGENCIES THAT WILL HELP A BROKE SISTA OUT, PLEASE ADVISE...MY UNEMPLOYMENT RAN OUT LAST MONTH...BUT, MY SPIRITS ARE HIGH BCUZ MY PLATELETS ARE UP!!! *SMILE* TAKE CARE YALL...KEEP UR HEADS UP...I KNOW ITS GETS TUFF BUT AS LONG AS UR 6 FEET ABOVE GROUND, REJOICE MY FRIENDS...TRUST ME....I PRALLY SHOULDNT BE HERE...I HAD A STROKE IN 2000 AND WUZ PARALYZED ON THA LEFT SIDE....MIND U, I WUZ SUPPOSED TO BE HAVIN A HYSTERECTOMY...10 MINUTES B4 SURGERY I STROKED....I WALKED OUT OF THERE 3 WEEKS AFTER THA NURSE TOLD MY FAMILY TO BE PREPARED TO PUT ME IN HOSPICE...OH, AND SINCE I WUZ WHEELCHAIR BOUND, I HAD A PULMONARY EMBOLI....3 YEARS AGO I HAD BILATERAL HIP REPLACEMENTS...NO LIMP.. BARELY ANY SCARS THANKS TO SHEA BUTTER...*SMILE* I DID HAVE THA HYSTERECTOMY...I HAVE LUPUS AND ITP...BUT I STILL CONTINUE TO SMILE....SO, REJOICE PEOPLE!!!!!
I LOVE YOU'S!!!!!

WHEW...SEE WHUT THA STEROIDS MAKE ME DO....LOL JUS BABBLING
Posted 6/6/2008 12:25 AM (GMT 0)
Firebaabe . . . . OH NO! Really watch how you are feeling while you taper the MTx . . if you lose any more ground . . . call the rheumy right away and let him know. I had to try to taper a couple times before I was actually ready. Congrats on your new job!! Woo Hoooo! I totally understand about the 6 hour drive. That is hard on me even when i feel my best. You are protecting your energy and that is a good thing . . . sorry mom doesn't udnerstand yet. She'll likely come around after a bit of time. Blessings!
Posted 6/6/2008 12:29 AM (GMT 0)
Justonce, Have you been tested for anti-phospholipid antibody? or anti-cardiolipid antibody?? Your strokes and embolism make it HIGHLY suspect. Make sure your rheumy has checked that out. Its thick, sticky blood and is easily managed if they identify it. Very common in lupus. YEAH!! So glad your platelets are up!! Sorry you are needing such a high dose of pred. . . . keep us posted about your progress with that!! Blessings!
Posted 6/7/2008 3:51 PM (GMT 0)
It's nice to get to know everybody's situation a little better. Well, since I am new, you don't really have much to compare this to, but I am doing so-so. I feel alright as far as aches and pains right now, but I am also VERY tired. I feel like I could sleep for about a week straight, but that is kinda difficult with a full time job. Sometimes I feel like working full time is a bit much for my body and mind, but I need the insurance so badly! My stomach hurts or I feel nauseous pretty much all of the time, and I have been having a lot more headaches lately. Last month I had one continuous headache for about three weeks. Usually though, my headaches are just sudden sharp pains that last a couple minutes tops. Is that weird? I think my main problem right now is that I'm constantly paranoid about what's gonna happen next. I have zero motivation or energy anymore. My mom thinks I am depressed, and I think she is right, but not sur what to do about it. Anyway, thanks for asking!
Posted 6/7/2008 4:50 PM (GMT 0)
Hi DQueen, Sorry if this is repetitive . . . but make sure and check your blood work (or ask you doc) if they've checked for anti-phospholipid antibody or anti-cardiolipid antibody. Many lupans have this and it causes thick, sticky blood (and miscarriages, strokes, heart issues). It is very easy to manage once you know you have it (aspirin or blood thinners) . . . but can cause WAY big problems if not managed. (thinking of your headaches). Yes . . . working full time is really hard when you are flaring. Make sure you use your lunch hour to rest if you can. I wasn't dx'd and had no idea what was wrong . . . but I used to go out to my car and sleep during my lunch time. I also had to nap before my drive home (or stop half-way home and nap) . . . I just could not get enough sleep. You'll also want to make sure your not anemic. That's common too and will make your really draggy. Actually anti-depressants (when needed) can cause a noticeable improvement. Do talk to your doctor about that because some of them even help with pain. I took anti-d's for many years and it was amazing how much better I felt. I had to try different ones for the best affect (one made me tense, one caused trouble sleeping, a couple caused low libido) . . . . anyway, its really worth looking into. Most members here do use an antidepressant as do many chronically ill people. Glad you posted!! Blessings!
Posted 6/7/2008 5:11 PM (GMT 0)
My Protienuria had subsided and come back again...but hey I lost 10 lbs in the process!! yeah I'm a little upset b/c I have to downgrade from my cute esspidrille wedge sandals to low flat flip flops b/c my feet have gotten so swollen. mad

I'm going to TRY to participate in a STRIDES FOR LUPUS walk next weekend, if my feet arent hurting as much.

I'm trying to keep a positive out look on things until they get back to the way things were b4 I went into a flare.

Other than that...Life is grand.  I've become a Muse for one of my guy friends this past week tongue ....OH BOY!!

Posted 6/7/2008 11:05 PM (GMT 0)
Hey, everyone....Hope everybody is staying cool this weekend. While for me I am doing well but, as i look at my coffee table in the hotel room. I should be with all the meds still. So, for now I am working just outside of Washington D.C. on the Virginia side. In the last 3 months I have been on both sides of D.C....and working hard.

My daughter will graduate on June the 13th and my wife and I hope to be in our new house the day after.

Best to all, Frank
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