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Roll Call: How is everyone doing??

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Posted 5/21/2009 12:28 PM (GMT 0)
Making a spot here so everyone can give an update on how you are doing!! If you feel well . . . it can encourage others . . . if you feel like *$%^# we want to be there for you!! I've been doing really well since I got over the colon issues and hospitalization early in the year. After I finally got the gut working right, I went back to the walking program and have v-e-r-y gradually built up to a slow 2 miles. I'm now adding a bit of speed and am walking 20 minute miles. I manage to fit in about a mile and a half most days and then 2 miles a couple times a week. I remain guarded about the sun and I do cover up . . but I'm not real extreme about it like I've had to be in years past. Last summer wasn't too bad either. This is why there are lots of days when I don't make to the computer!! Yeah!!! I'd love to hear from EVERYONE to see how you are doing. Blessings!
Posted 5/21/2009 1:44 PM (GMT 0)
I'm doing much better these days since starting daily pred, but keeping the weight gain down is soooo hard. I still seem to flare up right before my period and if there are any germs in the house. It never seems to fail, the kids start to get sick and I flare up. It's like my immune sys senses there is something to fight and just goes ballistic. I've noticed that lately I've been dropping things alot. I go to pick up a dish or cup and it just falls. My hands just don't work, so I have to be more conscious of what I'm doing especailly when I pick up the baby. Just had a great visit with my Mom last week, she came to stay for about a week and left last Saturday and I'm still tired. We didn't do a whole lot, but extra dishes and laundry and grocery shopping add up. I hope everyone is doing well. Take care and God Bless.
Posted 5/21/2009 1:55 PM (GMT 0)
Thanks Rosie.

I'm doing pretty well too. Just got out of a slump & not sure why these slumps happen. There are times when I take to my bed for a couple of days when the fatigue hits me hard, as though I've run into a wall and can't move. After a couple of days of complete rest I usually get back to normal.

Bottom line is that I have to be very mindful of everything I do & I'm usually pretty good at it, but there have been lots of issues with stepkids that sometimes get me down emotionally & that's not good. I work with my therapist to deal with these issues. I do wonder how much of these walls I run into are caused by emotion as opposed to my lupus.

But bottom line is that my lupus is quiet. What a blessing!

Pat
Posted 5/21/2009 4:14 PM (GMT 0)

  I still have the UCTD dx, with suspected lupus and/or other AI's - and the rheumie continues to test every six months. (Does that seem "usual" to keep testing for all those antibodies that often?)  I've been on Plaquenil for nearly 6 mos. and the last couple of weeks (knock wood) have been much better.  Still not sleeping very well - and still have pain and stiffness, but the fatigue has improved, my hair stopped falling out, and skin got better.  Sensitivity to sun is worse, however.  But at least this summer, I've made the connection to the sun (and flourescents)  being a flare trigger (thanks to all of you!) and I faithfully apply the sun screen.  Even my husband reminds me to get out of the sun now when I forget.

I'm honing my pacing skills - miss the days of just tying into projects come what may and being able to get so much done - but I am getting better at avoiding the bad crashes.  My fibro got pretty active as well this past winter - but there was a lot of stress and I tried to resume taking Lipitor in Feb. - which just didn't work and triggered some awful pain and malaise.  If I could find a way to eliminate the back pain I would be a changed woman!  Found out I also have Osteoporosis.  Rheumie wants me back on mega Vit D in order to begin Fosamax. 

I've given myself permission to say "no" when I need to.  I've been gradually building up my walking time and stretching reps.  A slow process, but every little bit more that I can do is it's own reward.  My fondest wish is to be able to travel again without flaring, but basically, for now, - it sure feels good (1 1/2 yrs later) to not feel so bad!  This forum has been a Godsend, and has helped me CALM DOWN about the whole thing.  Really helps to know others understand.

My hat is off to everyone coping w/ these health issues while raising children and/or grandchildren!  Good luck this summer, Patty!

Thanks, Rosie.

Posted 5/21/2009 5:27 PM (GMT 0)
I've been off the forum for a few weeks.  Needed some time to myself and figure out life.  I have made a massive lifestyle change. I"m in my 3rd week of a very extreme exercise program.  It's a 90 day home fitness program that includes diet and lifestyle changes.  I'm hooked. Addicted almost!  I look forward to every day with a new routine to do.  It's extreme. Kicks my butt.  However I feel great.  No pounds lost (thanks to the prednisone I'm sure).  but I have lost 5 inches overall.  Dropped a shirt and pant size. I think the muscle I've gained is taking the place of the fat I'm losing so the scale is staying the same. I'm strong. I love how my legs look  yeah  I feel clear headed, more positive.  My diet is so much better.  My fibro pain is nearly gone too. I'm not as stiff and sore in the mornings.  Overall, it's been the best thing for me to do.

 

I'll be tapering down my prednisone again.  The more I work out, the less I need pred.  If anyone is curious about the program I'm on, please email me and I can give you all the info. wink

 

Other than that, life is humming along.  Work is busy.  I'm getting baptised on May 30!  So I'm heading to church for my baptism class today. Excited about that!  Hubby is good and it looks like we're finally going to get some summer weather.  SHEESH!!!!

 

Talk with you all soon,

Ginny

Posted 5/21/2009 6:23 PM (GMT 0)
I am in the middle of a mild flare, I say mild because I nearly stopped functioning completely when we tried to wean my prednisone this past winter. We are settling into our new place and slowly orgnaizing everything. My checks are pink but not so bad that everyone notices. We still see Alexander once a week and I have begun to see this as partially a blessing since moving with a baby is nearly impossible. There is also the fact I am sleeping 12-14 hours a day right now. I keep wanting to start exercising but the truth is I hurt so much I don't. I am considering the fact maybe I need physical therapy again. It would at least get me working out a little bit. I actually miss the 98 degree water. It felt so darned good and I wish I could be in physical therapy year round. I need to try lowering my prednisone again but this time much much more slowly with the understanding that if I do worse I go right back up again. 20mg is a very high dose for me and I have been on it for months now. My poor bones. But that is what is happening with me, court is June 29th so everyone pray, cross you fingers, do whatever it is you do cause I want my son back, I do better when he is with us.
Posted 5/22/2009 12:43 AM (GMT 0)
I made a terrible mistake of staying in the sun too long around the first of April.. I went to my grandson's ballgame and forgot my umbrella... I've been in some big time pain at nights since then...
I do well in the day but around 4 or 5... I turn into an old woman.. honestly.... My husband doesn't know what to think about me... The pain and swelling has been the worst in my feet.... and knees....
I am a bit better... I've taken a leave of absence from my church choir.. we meet at night and I just don't want to walk in like this old person... and I have to wear my New Balance shoes all the time... That would look real good with a choir robe...
I hope the time is coming for me to be better......
Posted 5/22/2009 12:45 AM (GMT 0)
Doing much better since starting on Plaquenil . . . I had a few rough days of vomiting while getting used to the drug, but its better now and my energy levels are much improved, my skin rashes are almost gone! YAY! Getting ready to go to China . . . we leave on Sunday and get back middle of June. Gonna be a busy summer with work - Starting Sunday until the end of August, we are only going to be home for a total of 3 1/2 weeks. Hoping my energy levels stay up.

Basically, I haven't felt this good in years. Should have given in and done this years ago . . . I wouldn't have been so miserable for so long.
Posted 5/22/2009 12:58 AM (GMT 0)
I just went to my rheumy today and I am going to start a taper off my metho.  I'm hoping with this warm weather rolling in that I have half a chance to successfully do this.  My hubby and I want kids and thats what I told my dr.  He said it will be at least 9 months before the taper is done and we could even try without any setbacks.  I have really high hopes right now.  Praying for a remission.  Did have some slight finger pain on Monday, probably from slicing up a huge fruit tray and cheese and sausage tray for a shower I threw.  Was super tired Sunday night and slept 10 hours.  Otherwise, I did some running last night and my shoes with heels haven't been an enemy lately, but I can't wear them 2 days in a row without some slight knee pain.  Probably just a regular thing that anyone in their early 30s would experience anyways.  Oh well!  I'm doing very well right now and feeling very blessed.

Posted 5/22/2009 1:14 AM (GMT 0)
I hate lupus or my intestines whichever gets upset when I eat a banana two days in a row!!!!!!!!!!!!!!!!!!!!!!!!!! My diet is already limited enough, now we're back to not eating too much of one thing!!!!! ARGGGGG!!!!!

Other than that I am doing O.K., must be in a small flare right now because I've had a mouth full of sores, increased fatigue, those nasty headaches are trying to come back, etc. Thankfully I have an appt with my rheumy in 2 weeks. They had to move my appt back a couple of days and tried to schedule me with the PA, I called the office and told them I HAD to see the doctor, that I saw the other PA back in Feb and I desperately needed to see the doctor.
Posted 5/22/2009 4:08 AM (GMT 0)
Gotta go, gotta go, but can't go. Family doc (on my list now!) says urines fine. CAnt' stand up straight for left hip pain. Frustrated, not getting good health careand being left to suffer and get sicker, and doc doesn't care. mad   I'm too tired to care anymore. But other than that, everything is great! ;)
Posted 5/23/2009 12:09 AM (GMT 0)
I've been doing good. Went to a wedding last week I had soo much fun haven't seen some of my family in so long it was great to see them. I must say it did take a little out of me, slept alot. I've been walking alot with my husband 1 to to 2 miles every day they do have benches so you can sit which we do I'm also doing some yard work! yeppi
Debbie
Posted 5/23/2009 1:34 AM (GMT 0)
Keep the updates coming!! EVERYONE! It's great to catch up with everyone. I'm sorry for those of you who are have a hard time of it. But it is still good to catch up and know how everyone is doing. I won't be answering individual posts, but I'm reading all of them and it looks like lots of others are too, judging by the number of hits on this topic. Don't be shy . . . shout it out!! Blessings!
Posted 5/23/2009 2:33 AM (GMT 0)
Hi everyone,

Y'all probably don't remember me...it's been a while since I checked in; quite a few months actually. Just wanted to check in tonight and see how everyone is doing.

As for me, I am 5 months pregnant with my third boy, and the autoimmune symptoms have let up for the most part since I got pregnant. (They never could pinpoint exactly what I have: symptoms include exhaustion, sun sensitivity, stiff and achy joints, mouth sores, positive ANA, have tested both positive and negative at certain times for both antiphospholipid syndrome and anticardiolipin antibodies.)

However my perinatologist recently found out that the antiphospholipid syndrome has resurfaced and my anti-clotting proteins are very low. So I'm taking daily Lovenox injections and hoping to avoid the preterm (30 to 35 weeks gestation) delivery that I hear often happens with APS babies. And I'd be lying if I said I wasn't concerned that everything will come back with a bang after delivery. Still, we're very happy to add another little one to the family. I'm kind of sad that this will be my last, but I don't feel that I can take the risk of another pregnancy with the clotting issues. My doctors felt that developing problems related to the autoimmune issue were slim...and if I read the statistics right, they were correct. I only had a 1 to 2 percent chance of getting APS during pregnancy! I'm so lucky! LOL

Anyway, just wanted to check in and say hello! Hope everyone is doing well.

Kari
Posted 5/23/2009 2:40 AM (GMT 0)
After a rough winter of bronchitis, sinusitis [twice], acute severe exacerbation of my asthma, rounds and rounds of antibiotics, rounds and rounds of steroids both oral and IV, adjusting to allergy medications, etc., spring has sprung and I am DELIGHTED.

Though I have to go to twice weekly physical therapy for my hip and just got released from occupational therapy for my hand, I am feeling much more alive and capable. I have been trying to not let my head take over as the third anniversary of my husband's death approaches.

My "lupus" must be an odd duck as I can tolerate the sun and actually feel better when I am outside. I do think that the Plaquenil has helped because last year I got crazy rashes on my back and chest when I was outdoors. I do use massive amounts of sunblock and wear protective clothing. My joints just feel so much better in the warmth of the sun. Of course our heat is not extreme - today was 69.

Trying to learn to live with the limitations of my quadfecta of autoimmune diseases...it's hard but better than the alternative.
Posted 5/23/2009 4:50 AM (GMT 0)

Quick list!

Saw my GP (he is great- he requires the follow ups and really cares!)

My ANA was negative, my Sed and CRP were high- he said that bloodwork only helps to dx but doesn't rule out anything.  So everything is still fair game.  He believes me- nice- I told you he was great.

My rheumy appt is still 2 months away but he is sending my to a derm and says that anything they can find will help the dx process.  His office is calling with an appt.  See- great!

I am nauseous, rashy (is that a word?) sore and generally feel tired and crappy.

Summer is here.  Blue sky, fluffy couds and nice breezes.  Through the window- its still nice to see!  And central air conditioning- nice!

Started migraines (haven't had them in awhile- years actually) Not nice.

Dr. Great Guy is sending a request to the Mayo Clinic (hours away so no airfare).  They don't take everyone so please keep your fingers crossed for me.

Still have to go out of town for training.   no dx= no "official" reason not to go.  Yuck.  Those will be 12 bad days.

That's it in a nutshell!  I am trying to keep my sense of humor!  I hope this post finds everyone keepin on keepin on!  We can outlast these diseases and win!  We are stronger.

Posted 5/23/2009 4:55 AM (GMT 0)
This is a good thread. It's good to hear (see?) how everyone is doing, though I am always sorry to see the suffering.
Been a bit tough, lately. I went through a bout of pancreatitis (lupus induced docs decided) - better, now, but not completely gone.
And I know it seems (and is) trivial, but I have been most upset lately because my hair started coming out in clumps. A LOT!! So, I went and had it all buzzed off. Drastic, but at least it is super short all over instead of patchy.
This latest flare is kind of strange. Besides the pancreatitis, I have started getting some skin growths on my face. I see the rheumy in a few weeks. So, until then I am trying not to worry about it.

Hope everyone has a Happy Memorial Day!
Posted 5/23/2009 2:24 PM (GMT 0)
Great thread Rosie. It's so good to hear from everyone on one thread, and like you Rosie, I'm not up to commenting on everyone's post, but want you to know that my heart goes out to all of you who aren't doing well. Which, I guess, is just about everyone.

I have to interrupt this threat to ask Alienwife - where in China are you going? Is it a mission? My brother and sil live in China - don't know the spelling of the city but it sounds like Chekoo. It's an hour's drive from Hong Kong, and they love it. He works for an american corporation. I'm fascinated by travel and am envious of your trip. Tell us more.
Posted 5/23/2009 5:24 PM (GMT 0)
Update.... Yesterday morning, when my feet hit the floor.... I could tell that I was going to be better... My feet are not as sore as they have been for over a month... Today, I feel better too...
I hope my episode is over....
Posted 5/23/2009 6:29 PM (GMT 0)
This is great! Wonderful to hear from everyone! Well I am doing okay! Just finished mid terms this past week and got an A on my medical eithics midterm and a B on my speech midterm. So as you can figure I am exhausted. Looking forward to this wonderful 3 day weekend :) From work and school!!! I am in a flare but not too bad of one...I only know this because my kidneys are flaring and I have joint pain! Other than that things are good, my body has finally adjusted to my meds so I am feelin pretty good 2!
Posted 5/23/2009 6:50 PM (GMT 0)
Nice to see how everyone is doing. I haven't posted in a while either. My husband tore his achilles last month so its been rough trying to keep up with everything.

I went to the dermy on Thursday and was told that the spot on my back and stomach is localized scleroderma (morphea) so just another something that this wonderful disease gives. I'm hoping that they stay on my covered up areas because they sure aren't pretty. Joint pains as always are still bothering me but not continuous thanks to MTX. Having some neuropathy symptoms as well... tingling and burning. But for the most part I'm doing fairly well.
Posted 5/24/2009 5:39 AM (GMT 0)
Remember I had surgery about a month ago exactly a month ago. Well, I have had problems with it healing. Just taking a long time. A real pain in the rear.
Posted 5/24/2009 11:29 AM (GMT 0)
Was diagnosed over a month ago now. Have been taking Plaquenil for two weeks - no obvious side effects other than a bit of nausea occasionally. Obviously too soon to notice any effect. Also been given diclofenac for pain management - it took a while to work for me, but it's now taking the edge off the pain quite effectively. Still feeling very fatigued, cat napping my way through life.

Got really fed up with my GP - so I've switched. I really like my new doctors, they're brilliant and the nursing staff are fab too. Got some accommodations at work - they've given me a parking permit so I can park closer to my office and a comfortable chair, looking at other stuff in a few weeks' time.

Starting to come to learn how to live with it - have another rheumy appointment in October.
Posted 5/26/2009 7:06 PM (GMT 0)
I'm sorry it's been a while since i've been on.  I've had another lengthy hospital stay due to a severe staph infection.  The awesome news is that I continue to be off of dialysis and my kidneys are holding their own!  Yay!!!  God bless you, Judy

Posted 5/27/2009 3:28 PM (GMT 0)

Not so hot. I start pulm. therapy today. Wouldn't ya know it the weather is muggy and my breathing is bad. I found out my appt on the 9th is with the surgeon that will do my surgery. Even though they are trying to put it off for two years I know if I get sick I could do more damage and have to have it sooner. I also know 7 to 10% die in the first 3 months. I am afraid of this auto immune problem destroying my chances. Plus It is manadatory to have a support group but I had my heart cath done alone and I am meeting with my surgeon alone. Plus I have to have a fund raiser that pays for everything my insurance doesn't pay and I have no one to help. It's all waying very heavy on my mind right now.

thank you for asking hun

you're a doll

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