[crimson blue]

hi everyone. my name is Sabrina and i'm here cause i'm looking for support and information about my condition that i was diagnosed with on monday. so far everything looks promising.

I am finding myself having a hard time trying to explain to family and friends what exactly is wrong with me because i don't even know the details. the worst part is, is that it seems the more i learn, the worse off it seems.

i'm going to keep this short and sweet cause it is so late, but i will embellish later and feel free to ask any questions because i know i will be doing the same.

Diagnosis thus far (more testing still yet to be done): Lupus, Fibromyalgia, Carpol Tunnel Syndrome, Anemic

on top of everything else, i have had gastric bypass done almost 4 years ago, and that throws a major curve ball, especially with taking meds.

so now you know why i'm so confused with it all

 

[Katharine]

Hello Sabrina and welcome

Diagnosis can bring a whole heap of conflicting feelings with it. If you have been ill for a while, you can find yourself being both massively relieved at finally being diagnosed and, on the other hand, rather scared about what it is that you have.

You mentioned that things seemed promising. I think that is something important to keep in mind and there is no reason to worry about things unless they actually happen.

When reading through this site, you will see a variety of stories which range in their severity and also the different ways people are affected.

It is important to keep in mind that many people here are newly diagnosed or looking for diagnosis. There are also the more severely affected and also people who, like you, have had various "weird" health problems for a while and yes, it is indeed quite a confusing disease. Many of us have overlapping diseases and/or health problems.

On the other hand, there are also plenty of people out there that have lupus and that never visit sites like this one because they're doing very well with their treatment and are too busy leading their lives. That's where the positivity comes in.

It may well take a while for your treatment to kick in and it may also take a while to adjust that treatment to you as an individual but treatment has greatly improved over the years and it will make a big difference to you when everything falls into place.

Have you already been started on treatment?

bye for now,
Katharine

 

[tbunny1]

:welcome: Hi Sabrina!

I just moved to Philadelphia myself in the last two weeks. What part of PA do you live in?

You will find this site invaluable for both information and support. Don't know what I would have done without it when I was first diagnosed.

There are no stupid questions, so fire away!

 

[onetay]

Sabrina,
Welcome to the site. You do have some things going on lol well it is okay I am sure there is someone here that has the same things you do and will help you to understand it all.

As for family and friends well education and there is a part just for them on the site also if any of them are interested. It is hard for us to live with the diseases but hard to be "normal" and understand why someone looks fine and still complains of the problems we have.

There is a chat room here also and hope you have a chance to join us sometime and talk. That is were the real education and fun happens.
Have a wonderful holiday
Tammy

 

[Joandublin]

Hi Sabrina

Welcome to the Forum but Im sorry to hear about your diagnosis. How does your Lupus affect you? Thats about the first question anyone around here will ask because Lupus affects everyone differently.

I also have Fibromyalgia, Carpal Tunnel Syndrome and have a B12 deficiency caused by anemia so we could be 'message board twins'

Im sure you will have loads of questions as time goes on. Feel free to ask anything you like as there is plenty of advice and experience to be had here.

What treatment is being planned do you know? Im not sure of the gastric bypass complications but hopefully your specialist is up to speed on this. Looking forward to getting to know you.

Take care for now
Joan:rose:

 

[KarolH]

Hi Sabrina,

First I would like to welcome you to a great place. Lot's of great people here with unbelievable knowledge and always supportive. I was dx with Lupus recently and these folks have been my saving grace.

I am a Jersey girl, right over the bridge from you. Where are you located in Philly? I wanted to offer that although I am new to Lupus and learning myself I had Gastric Bypass in 2004 and am dealing with some issues because of it so if you need to talk we can do that openly here on the thread or feel free to send me a pm (private message).

If I can help in anyway to enlighten you I will. Also, a great book for newly dx people is "The Lupus Book" by Dr. Daniel Wallace. He is a world renowned Lupus doctor who writes the book in layman terms so it is easy to understand.

Hope to get to know you better and read all you can......knowledge is power.:wink2::wink2::wink2:

 

[crimson blue]

want some reading material?

Thanks to all of you for your kind words, information, and suggestions. Apologies to not getting back to you all sooner, so I will make up for it in my short novel.

The weekend was a bad one with me ending up in the ER on saturday because of really bad flare. On the upside of that episode (yes, there was a positive note lol), I was able to glean some information from the attending doctor, my mother was present to see me in my flare, and I got some lovely pain meds.

The info was that because my immune system is out of whack, when I get sick with an infection, I feel extra horrid and it will cause a flare. Not necessarily good news, but information is power. And knowing is half the battle! :thumbs:

My mother seeing my flare made her realize how bad my condition really is, that I'm not faking or milking anything, as well as her understanding what I'm trying to describe or explain to her. I don't want pity from her, just her support and understanding. And I think I finally got it. w00t. (Don't ask, just trust me)

I don't think I need to explain the pain meds part do I? lol lets just say that the pain is so bad, I'm currently on Diladid 2mg as needed.

If curious, my current list of meds include (but are not limited to):

**Adderall 20mg x2 (ADD, also helps a bit with the fatigue)
**Carafate 1gm x2 (lines the inside of the stomach so erosion/ulcers can heal without stomach acid aggravating it)
**Nexium 20mg x1 (acid reflux)
**Celexa 20mg x 1.5 (anti-depression)
**Plaquenil 20mg x2 (anti-inflammatory)
**Prednisone 5mgx4 for 2 days, x3 for 2 days, x2 for 2 days, then x1 (steriods)
**B12 dots x1
**Calcium w/D x1
**Diladid

Everyday Lupus effects: tired, chilly, achey, weight loss, loss of appetite, hair loss, Raynaud's Phenomenon, light sensitivity, skin rash

My flares are pretty much the same thing except to a much more severe degree and different body parts/joints hurt more than others and randomly with each flare. Hands and wrists are always a given. I will also experience intense abdominal pain which has been attributed to the erosion in my stomach lining.

What will cause a flare is normally one of 3 things: excessive sunlight exposure, physical exhaustion by pushing myself too hard, and ALWAYS and MOSTLY stress.

Stress is the evil doer to my health and flares. It's a catch twenty-two. It causes most of the flares, but because of it, I was able to be diagnosed so quickly. Unfortunately the worse or prolonged the stress, the same for the flares. And it's not something that I can easily remove or deal with in my life. I'm doing what I can to lessen it and better manage it, but there is still a lot there.

As of late, I have picked up some reading material at my local library that has been informative, and I get to talk to my Rheumatologist about a treatment plan in particular and hopefully have an update of sorts. :shrug:

 

[crimson blue]

I am a Jersey girl, right over the bridge from you. Where are you located in Philly? I wanted to offer that although I am new to Lupus and learning myself I had Gastric Bypass in 2004 and am dealing with some issues because of it so if you need to talk we can do that openly here on the thread or feel free to send me a pm (private message).

Fabulous! I am not alone!! **hugs**

My main issues and concerns are medications and diets and exercise. Anything that I can do to help myself both short and long term i will try within reason.


Oh, and I'm actually in Gettysburg. blah.

 

[KarolH]

Gettysburg is a lovely area and not nearly the rat race I deal with here.:lol:

If I can help in any way let me know.

I will try my best.

Enjoy the holiday and so sorry about your recent ER visit.

 

[LolaLola]

Dear Sabrina,
Welcome to you. Like you I am very sun sensitive. The sun makes every single symptom worse, not just rashes as you might think. There are some excellent posts on sun sensitivity, when you have time I suggest you do a Search for them. Explaining to friends is very difficult especially when you are still coming to terms with it yourself. We have all had people make stupid and thoughtless comments to us, you will learn how to handle them. In fact, you will soon learn an awful lot about controlling your condition. You will be surprised how soon you will be an expert!
x Lola