View Full Version : Just Need a Little Support

10-17-2007, 08:13 AM
Some symptoms have been sneaking up on me and today I really feel lousy. My legs hurt so badly - both of my hips in particular. I'm getting nerve pain again in my right leg; my right knee is numb. And, I'm so fatigued today (I slept OK - I should be rested) - lightheaded, maybe feverish. I'm down to 5mg prednisone (going down 1 mg a month.) Don't see my rheumatologist until the end of the month. I've been doing so well, this is just making me depressed. Has the prednisone been masking my symptoms? I'm still on imuran, plaquenil. On neurontin, too, but I've been weaning myself off of it (not on doctors orders...just on my own.) My husband is traveling again so I'm alone sometimes - not a fan of that. I'm working half time (I'm there now...) and lately some days it's all I can do to put in 4 or 5 hours. I know there are much worse symptoms to deal with than fatigue and pain - trying to keep it in perspective - but it still 'stinks.' :cry:


10-17-2007, 12:10 PM

Oh, it does stink. Fatigue and pain, the gnawing is a lot to deal with mentally. Feeling well, then going backwards. No wonder you are feeling depressed girl.

I know it is hard, but that is Lupus. Dang him. But it is to be expected, but nevertheless it still stinks...sigh.

Has your day improved since this morning?

How long have you been doing the weaning off some of your meds yourself? Neurontin, is for you nerves isn't it? I don't believe the medicine masks the symptoms, but alleviates them, keeps them at bay. Keeps it from developing into something else.

Is it like being between a rock and a hard spot? Afraid to stop dosing, afraid to be on them? Or just testing the waters to see how you will feel with out them? Maybe return to your original dose of neurontin and see what your doctor thinks. I think that would be a good thing. Maybe he can change up, minus, add...alternatives. Create a different drug regime.

My husband travels too. Right now five days a week and only home on the weekends. Is he going to be home soon?

So what can you do to get yourself feeling better mentally..hummm. A bubble bath..candle lights. Take in a movie with a friend... a Coke and a smile makes you feel gooood. Dinner delivered...or...scream, stammer and cry. That always works for me.

Hey, why did the 3 blondes jump off the building?
They wanted to see if their maxi-pads really had wings.

I do hope you are feeling better Jody...

10-17-2007, 06:55 PM
Oh, Oluwa, I loved the blonde joke! Thanks for all your insights - and understanding. I'm home curled up with my two kitties, my favorite water (boring, I know) and some mindless television. Pain is some better; fever seems to be gone now. All this stuff seems to come and go - so hard to predict how I'm going to feel from one day to the next. I can work from home tomorrow if I need to, so that might help. My husband gets home late tonight. He doesn't like to travel when I'm not feeling well, so I hate to tell him. Sometimes this disease makes me feel so isolated. It's always good to know I can come here and there will be someone who understands what it feels like. Thanks again, Oluwa. Hope you're well.


10-18-2007, 02:02 PM
im so sorry for all your pain im in pain about everyday and im only 15 almost 16 and my parents dont think i have lupus its so frustating especially at my age

10-18-2007, 02:13 PM
Icegurl, I can't imagine dealing with lupus (or whatever is causing your pain) at such a young age. I know so many young women face that challenge, and it requires strength way beyond your years. You'll find lots of posts from Ilovehistory who is 17 (I think) and has been facing a lot of physical challenges for much of her young life. Her postings might be a good 'read' for you!

Thanks for your caring reply. I'm "up and down" like so many others here - today I'm a bit better; tomorrow may be another story. A lesson to live in the moment, I guess!

Take good care of yourself, Icegurl.


10-18-2007, 02:16 PM
Hi Jody...did you work from home today? Feeling better, than your last better or worse from your better. :crazyeyes: See, Lupus itself is insane.

Glad you loved the joke. You aren't blonde are ya?

My husband stumbles in tomorrow night about midnight and out again on Monday. Though lonesome while he is gone, don't you feel even more so when ill...

One more day, the weekend will be here for you to enjoy...

Hope all is good with you,

10-18-2007, 02:44 PM
Ohhhhyesss - Lupus is certainly insane!!!

Better - lots of pain again this morning, but a bit better by afternoon. Not as bad as yesterday. I stayed home this morning; went in about 1:30 in the afternoon. I write grants for a non-profit, and I can work from home often, but sometimes I need things from others and that means being in the office. Besides, I really like the people in my office so I don't want to stay home all the time. My husband was home today, though, so it was nice to be there while he was home. He doesn't have to travel for a little while now...maybe a couple of weeks! Yippee!

You must get so lonely, Oluwa. That's a lot of travel for your husband. I know sometimes it's nice to have the house to yourself, but too much of a good thing gets 'old.'

I'm off tomorrow and looking forward to a long weekend of rest!


10-18-2007, 04:34 PM
Jody, hey...Pain sure does change one's outlook hey? I am very happy to know you were able to tend to it this morning by staying home till noon.

Indeed, I do get lonely :( it does get old, and being in a new place, state and city..it is hard. But I am adapting...it is easier when I feel well. And this week I have felt wonderful despite this stabbing chest pain we are trying to solve...what it is. X-ray revealed nothing. Scheduling an ECHO.

I am thinking pericarditis or another herniated disk. Or did I say that already. Ig the ECHO reveals nothing. MRI is next. PCP thinks it is costochondritis. Humm..I don't think so. I've had that, well unless what I had wasn't costo and this is...simply maddening.

I have a cat too. What are your's named? Mine is Pookie Monster and huge. Short legs, one eye blue the other green yellow. I love her so. Coos just like a baby when I squeeze her. And I have a Parson's Jack Russell named Riley Mildred but sweet nervous, hyper espresso drinking I swear, dog. Who can't still still long enough to be loved and hug. She is the Queen and comes also to the name Dog. My husband endearingly named her.

Indulge into your long weekend....fill yourself up with all good things,

10-19-2007, 05:18 PM
Oluwa, I think women are better at managing 'aloneness' than men are - we seem to adapt. I'm glad you've been able to do that, despite getting used to new cities. Have you moved many times? Where have you lived?

i'm sorry you're having chest pains - does sound like pericarditis (I've had that many times - first time thought I was having 'the big one - heart attack - scary!) Hope your docs can figure it out soon.

I feel better today - pain is quite a bit less. Still pretty tired, but I was home all day; slept late; paid bills; read; relaxed; made comfort food for dinner and my husband and I will watch a movie in a little while. One cat is cuddled next to me; the other is looking for a warm spot on the chair.

One cat is Pascha the other Pixie. Pascha is the 'alpha' cat - beats up on poor Pixie. But, Pixie is insane much of the time and probably earns it. They were my granddaughter's (still are, technically) and when my son and his wife got divorced, we got 'custody' of the kitties. We had just lost our cat - he was very old; had to be put down - so the timing was good. We also have a 'grand-puppy'. Our younger son has an English Setter that we take care of a lot. She's amusingly called 'high strung' - yeah, she's insane too! Sweet, though. We love having her here and spoil her like we do our granddaughter.

Jack Russell's are so cute, but I remember them being pretty 'high strung' too. Riley Mildred, huh? Hmmmmm....

Hope you are having a good Friday.


10-19-2007, 06:39 PM
Hi Jody,

I was raised in the UP, till my teens...then onto Seattle, with Mum and baby sis. Did a stint in the USN, 6 years, imagine that. Which took me to Aiea, Hawaii and California. I went to military schools in Philadelphia, where I trained in nuclear, biological and chemical warfare, firefighter, welder....converted to Air Traffic Control for my last four years. Studied in Memphis, TN. That was eons ago. Departed as a E-6, enlisted

After the USN went back to Seattle and made it my home. Traveled to many places for leisure though...Loved Hawaii, Maui so much purchase a timeshare. Sold which I regret. Planning in two years to take my retired living to Maui. I love the sun, though a naughty..I enjoy the nights, waves crashing on the beach. Everyday showers. Palm trees and fresh pineapple. I yearn for the Hawaiian spirit.

I would vacation there every year, but since heading out east 2 years ago I haven't been..sigh.

Riley for all Riled up..Riles...Mildred to let people know her gender. Otherwise I just call her Riles and my husband calls her Dog.

My husband should be home in a half hour and I'm ready to peter out. He loves my boiled chicken. So plain..I tossed in chunked rutabaggie, potatoes, carrots. And I will spoon it over spinach to wilt it before serving. Easy dish for late dinners when he lands.

After scheduling an echocardiogram and an AVI...my chest pains seem to be nil now. Wow. I just noticed that but my spine still hurts.. always a but with Lupus, eh? Yes, I have been feeling pretty good for oh about 7 days now. Though the pain is strong, I can deal with 1 or 2 at a time. I try to keep the Ultracet to minimum.

Time to set the table..
Sweet Dreams and I hope you feel well to enjoy the weekend.