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papillon
02-14-2008, 07:49 PM
I'm sad. My toes are aching so that I hate walking. My fingers are swelling. And the Raynaud's is so bad I can't drink a glass of lukewarm water without my fingers going numb. And it's my anniversary. The anniversary. The kidney biopsy anniversary.

I guess this past year, I kept thinking things would get better and then it would be like lupus never happened. Like a birth mark that only those who know me really well would ever get to see.

Instead, I get my first ever malar rash in time for Thanksgiving. Depression for Christmas. And swollen fingers and achy toes for Valentine's Day.

I wish I could go back to two years ago and just go crazy and see the world and stay out late and party like crazy since right now I feel like I don't want to be touched much less enjoy any holidays.

I hate being negative. Some things are good. Kidney function almost completely normal. My nephro called me boring with my last blood work. Starting plaqueneil which supposedly will make things better eventually.

I guess I just feel overwhelmed by my inability to undo Lupus and it doesn't help that I'm achy. And my car headlight won't turn on. And I got a paper cut.

Okay that's everything.

I am really happy this forum is here for the good, the bad and the ugly days. Today has been an ugly one.

alanah_hope
02-14-2008, 11:01 PM
It seems that bad days sneak up on the worst possible times. Holidays where everyone expects you to be happy, and you're just in pain and feeling sorry for yourself.

I'm glad you can see that you are doing better though, and i hope you continue to improve. Go on, continue seeing the good in things, and there really is a lot of good out there waiting to be noticed. = )

i dont care what anyone says. paper cuts hurt. perhaps a cute bandaid will help? the cuter they are, the better you'll feel... so says the study i just made up.

sending you cyber hugs on your ugly day, hoping a pretty one is following it close behind,

Alanah :D

cheryl_v
02-15-2008, 07:29 AM
So sorry your having such a bad day. I agree with Alanah, paper cuts are painful. I rather get a regular cut, not as painful. Some days are just bad ones, we just try our best to make it through hoping tomorrow will be better. Gentle hugs, hope todays going well :D .

Oluwa
02-15-2008, 08:28 AM
Papillon,

Lupus ...isn't Lupus the worst gift giver. Rash, depression, bloat, like what more could a girl ask for, hey..a lump on the head, a paper cut?

I hope you were able to give the gifts back..

The one good thing about feeling negative, it allows us the ability to seek out something better, because we know there is, we've experienced it. If I can find 100 things wrong, I know I can find 100 and ONE things right...

Did you crawl out of the hole today? Need a ladder?

Close your eyes...and feel tight hugs from all of us..
Oluwa

Oh, hey...I love the Panda, how cute....

mnjodette
02-15-2008, 11:23 AM
Me too, Papillon! I want to turn the clock back 2 years and forget this nasty thing....IT as Oluwa endearingly calls our friend....even exists. Not to be, though....

So, keeping a positive outlook is the best we can do. Just when we think we understand IT, along comes a new symptom (achey toes; malar rash) and you have to work a little harder to think positively. But, keep it up! We all still have a good life to live, some with more limitations than others, but worthwhile even so.

Nice to have this spot to hear how others are handling things. And nice to hear that your kidney function is normal now! Yippee!

Jody

papillon
02-17-2008, 10:34 AM
Thanks guys. It's good to vent on occasion. I am feeling much more positive today. My toes are still achy but everything else is much better. Thanks for the cyber hugs and warm thoughts. My boyfriend and I are actually celebrating Valentine's Day today with dinner and a movie so yippee.

papillon
02-17-2008, 10:42 AM
also question?
do people medicate their malar rashes or do you just wait for them to go away. My rheumy mentioned going to see a derm about using a topical steroid cream. Do they go away?

jesseyleigh
02-17-2008, 11:59 AM
BTW i love plaquinil!!! (if you ever dreamed of being a platnium blonde here is your chance!) that really did help me to get on the right path. I was given cleocin a topical antibiotic it helped some maybe the steroids will help!

Oluwa
02-22-2008, 08:46 PM
Papillion,

How are you this day..

Malar rash. I just pamper it. Mild soap, light facial cream. Red when in a flare or not feeling swell. Light pink when I am IT norm, my normal with Lupus.

Easy on the steriod creams, can cause skin to thin...a little dab goes a long way.

If you wear makeup, they have powder with a green tint to it...it counteracts the red...green cancels red. You can get it in cream form to. Both at your local drug store, Walgreens, CVS...in the rogue or concealer section...then put you base foundation, powder over it....

Plaquenil has been a good friend to me too.

Be well,
Oluwa

papillon
02-22-2008, 08:56 PM
Hi,

Thanks for the well wishes Oluwa. I'll be careful with the topical fun. I feel overwhelmed by dermatologists usually. She wants me to try differin for blackheads with the topical steroid. How much can a poor face take?

Jessyleigh, I don't understand the platinum blonde. Does Plaqueneil change hair stuff? (I'm very slow on occasion.)

So far Plaqueneil is going okay. I've gotten past the headaches (woohoo!) and am enjoying a medicaiton that does not care when or how much I eat (as opposed to the cellcept which has made me a picky eater)

The days are better (even though the weather is worse. am i the only one who is looking forward to the spring? )

Oluwa
02-23-2008, 04:54 PM
Hi Papallion,

Just be tender with the skin...and it can take a bit. Baby soap...Plaquenil can bleach hair, a rare side affect...

I love spring in its pastel blues, pinks and yellows..Spring has sprung here is South Carolina...my Crocusus are peeping and so are my Daffodills. My Camellias are still blooming....or my my coral red Tulips.

Easter next month, can't wait. If I didn't look silly I would go on an egg hunt. Malted eggs...Jelly Beans...yummy...

I still lick the speckled malted eggs and rub the blue color on my lips..like lipstick...

And how was your day,
Keep well,
Oluwa

sits_inthe_corner
02-23-2008, 06:37 PM
Oluwa ... you do bring a smile to my lips...bless yer socks. :)

mnjodette
02-25-2008, 02:48 PM
Oh...I LOVE Daffodils. My favorite flower! I didn't put any bulbs in last year, so none for me unless I buy them in a pot. Such a pretty picture they make in my head.

Malted milk Easter eggs...ummmmmmm. You have good taste, Oluwa...care to share a bag?

Jody