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babs3169
07-08-2007, 07:43 PM
Hello..

I'd just like to say that I'm so grateful to have found a forum for Lupus!!

I am newly diagnosed and trying to get appointments w/a Rheumatologist in my area (keeping fingers crossed!!)

Looking back, medical issues point to possibly having had Lupus since 1992, but that's to be seen I suppose.

I am the mother of five, (11-26) and work full time in a stock brokerage .. Hoping to be able to continue my career.

I'm at the end (I hope :roll: ) of a flare, my first official one :wink:

I have lots of questions and I'm sure I'll be picking your brains for some time to come. I welcome any and all suggestions for coping mechanisms.. How you handle your day to day to keep yourself going as long as possible...

I'm scheduled to go back to work tomorrow, and I am really hopeful that I have the stamina to get through a day..

Thanks for being "here" and I welcome any and all help!!!

Saysusie
07-10-2007, 10:31 AM
Hi Babs :lol: :lol:
Welcome to our family! Please pick our brains as often and as thoroughly as you want. That is why we are here.

We are all familiar with the debilitating fatigue and have had to make lifestyle changes in order to deal with it. My suggestion is to accept the fact that you are going to get fatigued. Do not try to "work" through it, do not try to keep pushing yourself. Doing so will certainly worsen the fatigue and could eventually send you to a place where you cannot even get out of the bed. Take the time to rest, nap or just sit still. Allow your body to get the rest that it so badly needs. If you can find a place during your lunch hours or your morning and afternoon breaks to rest (I used to crawl under my desk and actually fall asleep), then do so. Listen to your body and NEVER ignore what it is telling you. Stay out of the sun if you can, and when you can't, make sure that you wear UV protection SPF 20 and above.
Take your medications and work closely with your doctors if you feel your dosages should be changed or if different medications is needed. Never stop medications without your doctors knowledge. Finally, try to do some type of exercise on a regular basis. This helps with the fatigue and also helps your body to maintain some form of normalcy. Try to stay away from jarring aerobic exercise!

We are here to give you as much help, information, support and comfort as we can. I wish you the very best!

Peace and Blessings
Saysusie

IloveHistory
07-10-2007, 12:35 PM
Hi Babs3169!

Welcome to the Forum! :D I'm glad that you found us! :D

Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!

Keep well! :)

babs3169
07-10-2007, 05:58 PM
thank you so much for the welcome!!

I will be questioning alot... I am sure!!

IloveHistory
07-11-2007, 10:37 AM
It's only a pleasure! :)

babs3169
07-15-2007, 09:01 AM
little update

saw the Rheumatologist on Monday... He sent me back to the lab for more decisive tests..which I had done on tuesday....I'm waiting for those results..

He said that the ANA of 1:160 is usually indicative of Sjogren's :?

He's trying to define Lupus or Sjogren's.. or both ???

I should hear from him Monday or Tuesday with the results...

I'm on the fence... do I want him to say it's Lupus or SS? Do I want him to not? being told it's one or the other is good in that there can be a diagnosis and action.... but hearing it definitely ? Then it's there..black and white. No way around it. :cry:

I know you've all been "here" ... any ideas how to deal..? I would really appreciate anyone's thoughts...

Thanks so much.

Saysusie
07-15-2007, 09:17 AM
One thing that we've all said is "I am glad to finally have a diagnosis so that I know that I am not losing my mind and so that I can finally get treatment!"
Since, prior to being diagnosed, we suffered from so many symptoms that so many doctors (& friends & family) didn't believe and/or told us that they were all in our head, we were pretty happy to be told exactly what was wrong with us.
Neither disease means an end to your life, both mean that you will have to modify some things about your lifestyle, be careful of some things, take medications and be very responsive to your body. But, with treatment and all of the aforementioned, you can live a relatively normal life. I have lived with Lupus since 1985 and, while I've also developed Fibro, Raynaud's, and other auto-immune disorders, I can still do all of those things that I love to do and can still maintain a relatively healthy and normal life. So, getting a diagnosis is a two-sided blade, but it is not the end of anything!!
Whatever your diagnosis is, we are here for you to help you understand what it means, to answer your questions, to give you information, to provide support and to let you know that you are not alone!

Peace and Blessings
Saysusie

babs3169
07-15-2007, 10:59 AM
thank you! That means more than I can say.

IloveHistory
07-15-2007, 11:41 AM
Hi Babs3169!

I'm glad to hear that you may finally be getting a diagnosis. I wish you luck; please let us know what your Rheumatologist says.

However, know that whether it's Lupus or Sjogren's, you can still come and join in on this Forum, as many other people do. Many people on this board have Sjogren's Syndrome (including me) or both Sjogren's and Lupus, so you will always find help, information and support. Remember, we're all here for you, no matter what! :)

Keep well and God bless! :)

babs3169
08-08-2007, 05:07 PM
Just thought I'd let you all know.. I'm still here....Mostly reading and lurking about... I'm not diagnosed yet as having anything other than neuropathy .. no where near it..

I'm back at the blood labs for another round of testing...

BTW, when I posted my ANA I was incorrect. I've gotten a copy of my labs and it was 1:1280 ... huge difference there..

Second set of labs for lupus, sjogrens, and assorted other things were all negative..

Tomorrow is the third round since a positive and a negative cancel each other out so we're going for the "tie breaker " :D

Also tonight.. I had a second MRI.. the first was without contrast and that was "unremarkable" tonight was with contrast.. I should hear in a day or two...

So, I'm still sitting on the exam table, figuratively speaking... and still reading alot here in the forums.. Thanks for listening.

Saysusie
08-08-2007, 05:37 PM
Hi Babs :lol:
Well, I guess that you can say that we are all sitting on the table waiting with you :(
Yes, your ANA titer is quite a big difference. A negative is considered anything below 1:80. Since your titer was 1:1280, I'd say that this is probably considered a positive ANA. Unfortunately, many other illnesses can have a positive (high) titer, so this is not enough for your doctors to make a Lupus diagnosis. I suppose this is why they are continuing to test you.
So, we will all wait patiently with you!

Best Of Luck
Saysusie

KCsMOM
08-09-2007, 07:01 AM
I do not have lupus myself but my 10 year old son was diagnosed with systemic lupus and lupus nephritis at the end of June. I know how hard it is to wait for all the results. Of course we never wanted to hear our son had lupus, but it did provide a sense of relief just to be able to get a definite diagnosis and start a plan of treatment. I think the doctors knew what it was pretty quickly but just couldn't say for sure without all the tests to back it up. Since then I have come to realize(largely from reading posts from the wonderful people on this forum) that there is still life for our son after getting that diagnosis. It will be a different in some ways but it can still be happy and full. Please know that I will be praying for you and as it has been said, we will all be here for you no matter what.
Blessing and peace,
Beth
John 16:33 These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world.