PDA

View Full Version : New here



tahohvn
10-26-2002, 02:18 PM
You don't know how happy I am that I've found an online group to talk with! I'm Denise, was diagnosed with Lupus 2 1/2 yrs. ago and am ready to be active in discussing it. It's amazing: I don't know anyone in my life that has Lupus--at lease nobody that I see or talk to on a regular basis. I've been to a couple of local support group meetings but haven't "made friends" with anyone. So, I'm hoping to connect here, live chat, etc.

Saysusie
10-26-2002, 08:01 PM
Welcome Tahovn;
We are here to help, chat, answer questions and/or just understand your feelings about having this disease! Which type of Lupus were you diagnosed with? Most of us on this site have Lupus or someone close to us has been diagnosed, so we pretty much know the ups and downs of this disease.
If, at any time, there is anything that we can help you with, know that there are several of us who always monitor this site and will readily respond to you.
Again - welcome!
Saysusie

tahohvn
10-26-2002, 10:39 PM
Thanks! I have SLE. It started with pains in my neck, as if I'd been sleeping funny. When they wouldn't go away, I saw my doctor who did blood tests and prescribed physical therapy. When he got the blood results, he called me and told me to see a rheumatologist right away. That same night, I washed my mini-van--30 minutes later, my hands & fingers hurt so bad they were burning. I'd never felt like that in my life. I called my Dr. the next day to tell him what happened and he hung up, called the rheumatologist and made an appt. for me that same day. That's how it all began. My worst has been a 51 sed. rate with a count of 2640, my legs and arms looking like a mild to bad sunburn, all with a positive ANA. I'm not taking steroids yet, but I worry that as I get older(I'll be 40 in Dec.), the disease will accelerate. I'm currently taking: 200mg. 2x/daily Plaquenil, 10mg. Flexeril at night, 500-1500mg. Naprosin daily, multi vitamin w/extra Iron for anemia.
Also, I take Zoloft for depression, which was helped along with the Lupus. I've yet to be in remission and I've also done way to much, way to many times! I know, bad me.....I do have a supportive family, which helps. Now, if I would only answer "yes".
Thanks for the welcome--it means alot to me.

Denise

Saysusie
10-29-2002, 08:18 AM
Denise;
Sounds like you also suffer from Raynaud's Syndrome. Has your doctor explained the reasons for each of your medications and do you understand their purpose? One of the best defenses against this disease is knowledge.
I am glad to hear that you have a good support system - that, in itself, is often one of the most important things!
I am also glad that you are taking the time to learn more about Lupus and, on this site, we will often bring you information about new treatments, new studies and research findings.
We are here for you!
Saysusie

Saysusie
10-29-2002, 08:18 AM
Denise;
Sounds like you also suffer from Raynaud's Syndrome. Has your doctor explained the reasons for each of your medications and do you understand their purpose? One of the best defenses against this disease is knowledge.
I am glad to hear that you have a good support system - that, in itself, is often one of the most important things!
I am also glad that you are taking the time to learn more about Lupus and, on this site, we will often bring you information about new treatments, new studies and research findings.
We are here for you!
Saysusie

tahohvn
10-29-2002, 09:31 AM
Saysusie: I never thought about Reynaud's. Actually, I don't know much about it, so now I've got more to learn about! And I will. It's interesting: All along, I've been thinking that everytime I feel an ache or pain, whether in my hands, fingers, muscles, etc., I think I'm having a flare. But, it's just been within the last few months that I realize this: I have a disease that's always with me. I'll probably always have the aches and pains, but when I do get a flare, it's gonna be worse. I'll be more tired, more hurting, etc. Gosh, this isn't fun, is it?!
Okay, off to search for Reynaud's info! Thanks, Saysusie.
Denise

stjames13
10-30-2002, 05:10 AM
Welcome TAHOHVN.....sorry it took me awhile to post but I have been down a bit lately...but I see MS.SUSIE has taken good are of ya....Hope to see you often and soon
TAKE CARE ..BE WELL and MAY GOD BLESS

stjames

tahohvn
10-30-2002, 09:30 AM
Thanks! I hope to visit alot, too. As I said before, I'm definately looking for a place to sort of, share the wealth!

Denise

admin
11-01-2002, 10:03 PM
Welcome aboard Denise!

tahohvn
11-01-2002, 10:55 PM
Thank you, Admin! Hey--saysusie...I've been reading about Reynaud's and it's obvious to me! I'm not surprised, though. At least, now I will tell my Dr. that I definately suspect it.

Denise

stjames13
11-02-2002, 04:49 AM
TAHOHVN.....I too have RAYNAUDS SYNDROME and it can USUALLY be easily taken care of with PROCARDIA XL....the dosage depends on how bad it hits you. IF you stay away from cigarrettes,coffee and chocolate it would be of great help. Raynauds for unknown reason closes the small arteries in your extremeties
usually your hands and feet...BUT beware as one day due to the LUPS it came on so strong it closed ALL the small arteries in my heart thus sending me to the hospital with a CVA...Be carefull with this, though compard to LUPUS it's not half as bad it too can do some serious damage. It can cause you to even lose the tips of your fingers and toes if there is not enough circulation in those areas for a long period of time and can become quite painfull.....get some big warm fuzzy MITTENS,,,not gloves but mitten and keep em on!!!!! Check with your DOC to be sure of any diagnosis. Good Luck and PLEASE take care

stjames

tahohvn
11-02-2002, 12:27 PM
Thank you so much for the info. My Doc. already gets mad when I walk in there without a sweater on! I usually leave it in the car. But, seriously, I WAS always the person without the long sleeves and jacket on. I never ran cold--always warm. Now, I wear a sweater when it's 70 degrees outside, sleep in sweats on mild nights, even wear socks with my shoes most of the time--except in summer. I've actually witnessed the difference in my body sensitivity. I don't see my Doc. 'til January, but I'm sure going to be more pro-active in protecting myself.

Denise

stjames13
11-03-2002, 04:19 AM
The LUPUS tends to bring on OTHER auto immune problems so keep an eye open for any other things that seem to feel different...keep and eye on how your feeling ....like are you tired all the time etc....if so you may also wanna get checked for THYROIDITIS....another auto immune disease that tends to pop up with Lupus...TAKE CARE AND STAY WARM!!!!!!

stjames

tahohvn
11-03-2002, 11:14 PM
Thanks! We moved into a new house in May and next Sunday we are having family & close friends over for a Jewish house blessing, so I've been busier than usual. I'm being real careful, though. Doing little bits and a time and hubby & the girls are helping too.

Denise

stjames13
11-04-2002, 04:18 AM
COOL glad to hear you're feeling well and your spirits are up.....sounds lie a nice time with the family....I remember when my inlaws came over for the Jewish house blessing.....what a nice time..enjoy


stjames

tahohvn
11-04-2002, 09:23 AM
Aha--you're Jewish. I work in the synagogue office. I'm their first paid Office Asst. Yep, I'm hanging in there for Sunday. It's so hard not to stress about stuff! Which brings up a question: How do you get your husband and kids to lend a hand BEFORE having to ask? Asking makes me feel so "not capable", even though I know I need to share!

Denise

Saysusie
11-04-2002, 02:03 PM
Re: asking for help. I have found that starting out by just telling them that I am going to do as much as I can because I need to feel like I am still capable. BUT - "You guys know me so well and if you see me trying to bite off more than I can chew, Please don't hesitate to jump in and save me from myself!!!"
Somehow, this makes them feel like heros and I don't have to really ask for help - the fall over themselves trying to give me help!
I am happy that you continue to search for answers and seek out information! Stay Strong!
Saysusie

Saysusie
11-15-2002, 04:13 AM
Denise;
How did your "House Blessing" go? Are you ok?

Saysusie

stjames13
11-15-2002, 04:27 AM
Denise.I am not Jewish but my lovely wife is,,,,so how did the house blesssing go????

stjames

tahohvn
11-16-2002, 10:06 PM
The blessing was great! I felt very proud to have all the family and some friends here, too. We've been here 6 months and it's the first time everyone was here at once. It went really well. I'm feeling okay. Now with the Holiday quickly approaching, I'm going to get started early(usual for me is a few days before!) so that I can do short shopping trips! I really appreciate your support!

Denise

Saysusie
11-21-2002, 03:12 PM
Denise;
I'm happy that the "House Blessing" went well and that you are feeling better. I hope that you have a wonderful Holiday Season and make sure that you take very good care of yourself!
Saysusie