Hello from Texas

mcitymom · Posted: Sat Jul 05, 2008 8:31 pm Post subject: Hello from Texas

Hello everyone. I am new to this message board. I was diagnosed with Lupus in September of last year. I'm 42, a mom of 2 great kiddos (11 and 7) and have a husband of 15 years who is also great. It was weird how I found out that I had Lupus. I was having a stinging sensation in my head (a headache SO massive that I thought for certain that I had a brain tumor). It never went away, and it never got better for the better part of 2007. After changing general practitioners twice, I finally found a doctor thorough enough to do a full blood work up, and he found a sky-high ANA. That's when the other tests were done, and it was confirmed to be Lupus. I was relieved to know "what" it was (since many other things were talked about, such as a brain tumor, Multiple Sclerosis, and other scary diagnoses). But, relief turned to concern as I read many of the things about Lupus out there and the things that can sometimes happen. I've been trying to gradually learn about it, taking it a little bit at a time, and absorbing what I can. I'm on plaquinil - 400 mg per day. I have some symptoms (my headache finally went away, which was good). But my joint swelling is worse, and my fatigue is shocking. All of my other tests show everything is fine - liver, kidneys, lungs - all doing OK. So, that, I'm thankful for.

Anyway, I just wanted to say, "hi" and that I'm grateful for others out there who know about this disease and are willing to share with those of us just learning. Thanks for having this site. It makes me feel comforted to know there are others, like me, who are living with this disease.

My prayer each day is to get my kiddos raised. But I think that's every parent's prayer, whether they have a disease they are living with or not.

Take care everyone. And thanks again for sharing your experiences on this site.

- Stephanie

rob · Posted: Sun Jul 06, 2008 4:44 am Post subject:

Hi Stephanie,

My name is Rob, and I was diagnosed with SLE in 2004, and MS in 2008. The fatigue and joint swelling/pain you are experiencing are two of the more common problems that people with Lupus have to deal with. While there is no "textbook case" of Lupus, those are a couple of almost universal symptoms. It sounds like you are on the right track, and are managing things well. You have a diagnosis, you are taking plaquenil, and you don't have major organ involvment (kidneys liver etc.). It's also a good thing to educate yourself about your disease. It's easy to become overwhelmed, and scared to death when reading of some of the possible problems lupus can cause. Taking it all in a little at a time is the best thing to do. Try to remember that many, many people live a long and productive life, never having any of the more serious problems such as major organ involvement. The fatigue can be overwhelming. For me, it feels like I have a lead blanket covering me, and every step feels like I am walking in quicksand. It comes and goes. I also have cognitive dysfunction quite often, or "fog " as you'll hear it called here. It sounds like you are on the right track with your Dr. and treatment. Be aware that sunlight can bring on a flare or make your current symptoms worse. Sunblock and a hat are a must. Anyway, I'm glad you found us. This is really a great website, and the people here are just awesome. Welcome!

Rob
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It's better to be considered a has-been, than a never-was.

Saysusie · Posted: Sun Jul 06, 2008 8:11 am Post subject:

Hi Stephanie;
Welcome to our family. Rob has already given you some excellent advice, especially about enjoying every extra moment of sleep that you can get Laughing

For many of us, that is not a pleasure we get to partake of very often.
I also have to reiterate what Rob said, it is very important that you educate yourself about Lupus, its symptoms, its medications, its treatments and how it specifically affects you. Doing so will eliminate a lot of stress and concern and will enable you to make informed decisions WITH your doctor. It is equally important that you educate your family and friends so that they can understand how Lupus affects you and understand your limitations.
You will have to make some lifestyle changes (like avoiding the sun, as Rob mentioned) in order to help you manage your disease. Start doing those things now and continue to do them from now on. Your goal is to hopefully prevent Lupus from exacerbating and from flaring up! Take your medications diligently, keep your doctor's appointment, avoid those things that can cause a flare and be cognizant of how your body reacts to Lupus.
Should you have any questions, concerns, fear or just want to talk, we are always here. We want to make sure that you know that you are not alone!!

Peace and Blessings
Saysusie
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Look For The Good and Praise It!

KathyW1958 · Fierce Wolf Joined: 12 Jun 2008 Posts: 598

Hi Stephanie,
Welcome to the site. There are a lot of us with Lupus that comes in here. It is great and there are a lot of wonderful folks who come in here. They are very compassionate and understanding. Hugs,
Kathy
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Lupus for many years. Like most of my life. Sjogrens that started at 35 and Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

Medications:
Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

mcitymom · Posted: Wed Jul 09, 2008 3:50 pm Post subject:

Thanks everyone. I've found SO MUCH great info on this site already. I appreciate everyone sharing their experiences. I look forward to being a part of the message board. Thanks for posting a reply!

- Stephanie

Saysusie · Posted: Thu Jul 10, 2008 11:28 am Post subject:

You're welcome, Stephanie!!! We are always here.

Peace and Blessings
Saysusie
_________________
Look For The Good and Praise It!

sits_inthe_corner · Posted: Fri Jul 11, 2008 2:32 pm Post subject:

Just adding my welcom mcitymom, glad you found us.
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