Lupus-need advice,please

[c4a]

Does anyone have Lupus or a family member with it? What should I expect? Are anti-inflammatory drugs the only answer or has anyone found other ways? Is it something that is just going to be a nuisance or a huge change in life? How fast is the degeneration process? I know everyone is different...but is this something that is going to take decades, a year or two, or just months?


Thanks. Scared out of my wits is putting it mildly.

 

[mickeymedic]

Hi c4a! I don't have lupus, but I do have UCTD (which often precedes a lupus diagnosis.) I found a great website that should help answer a lot of your questions and give you a wonderful community of people who are going through the same things you are.

www.butyoudontlooksick.com/boards

I hope you find the answers you are looking for!

 

[tink_n_pooh]

I don't have any advise but I do have a website that has tons of advise for you...

www.butyoudontlooksick.com they even have their own message boards there

 

[tink_n_pooh]

Hi c4a! I don't have lupus, but I do have UCTD (which often precedes a lupus diagnosis.) I found a great website that should help answer a lot of your questions and give you a wonderful community of people who are going through the same things you are.

www.butyoudontlooksick.com/boards

I hope you find the answers you are looking for!

Hi MickeyMedic, I see you finally got an answer. I haven't been over on the other boards lately, how are things going?

 

[mickeymedic]

Hi Tink!

I switched doctors and my new doctor is pretty on-the-ball with everything. While my UCTD diagnosis is not "official" she said if they didn't find anything that specifically points to another disease, that we would probably just go with UCTD for now.

I've been physically feeling a lot better the past couple of months - but that is probably because I have not been working. I lost my job in August and have not found anything else yet. So, while I don't enjoy depleting my savings, I am enjoying not feeling like crap.

 

[c4a]

Thank you! Going to go check it out,now. UCTD-it's a lot like lupus, isn't it? In that they both affect the immune systems..kinda' throwing them into overdrive? But where lupus attacks the joints first, UCTD attacks the ligaments? Is that right?

I feel like I am having to play catch up really fast.
I JUST found out my mil has it. I refuse to put her in a home, later on. Not an option. If we need to sell the house and get something bigger...so be it. I need to find out what I can so i can prepare dh. They are so close. Hers is degenerative systamatic? She is already in stage 2. For the past couple of years, she has been suffering with the swelling. The doctors just kept saying it was arthritis or rheumatoid arthritis. So, for two years we have been treating it with Ben Gay.
I am not understanding a lot of what I am reading-it's like I am in a daze. The doctor says that "hardening of the organs is a real possibility."
She has stomach problems that makes taking nsaids not an option, neither is the steroids due to allergic. So, I am going to see if I can't find some kind of holistic approach that we can ask her Dr. about. His response was "Well, you can't take the anti-inflammatory drugs or the steroids. You'll just have to deal with the swelling and the pain." What a jerk.
I don't know what to do next. I feel helpless as to how to help her.
I already called and talked to the chief at the fire department and quit. My family has to come first. I called the local hospital and signed up for a "caregiver's class". I am not really sure what that is about. We made an appt. to speak to a nutrionist, tomorrow.
The diet is going to be tough-we are southern. If it isn't fried, salted, or dipped in BBQ sauce...well, one of the sides better be. It will be healthier for all of us, though & if that is what it takes...

 

[Corryn]

I'm sorry to hear about your diagnosis. My 38 yo sister has systemic lupus, and I don't want to scare you, but it's not fun. I know that she would love to talk about it with someone else, and I'm sure she will answer any questions you may have. If you would like, I will email her with your email address and you girls can talk. She just completed a Lupus walk in TN a few weeks ago. I also think my baby sister *she's 32* lol! has it, but it's very hard to diagnose. No one else in our family has it, either.
Let me know what you want to do......
God Bless You
Corryn

 

[c4a]

That site is amazing. Thank You!!! I found the meaning to a lot of the words I wasn't understanding. So, I have a little better understanding of where we are. It is covering things that I hadn't even thought to worry over, yet...the dentist, eye appts, sun exposure, etc. Wow. You are awesome!

I feel a little calmer, now. I think we can handle this...gonna' have to. I'm still scared but not terrified, chest hurting

Why can't the medical profession word things so that common people can understand them? I understand it goes back to the greek work-however, I don't know many people who speak greek. I definately do not know many senior citizens who speak greek. That is why I go to all the Dr. appts. with mil and fil. Between the "foreign language", hearing problems...