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wilsgurl
02-01-2011, 03:11 AM
Hi,
I've recently been diagnosed with SLE and I'm terrified. I'm a new schoolteacher and I'm in the midst of a flare so my job status right now isn't stable. I've always been active and an overachiever and I feel lupus has robbed me of everything I love and am used to. It's hard to get those who know me to understand I can't do what I used to do or how I really don't feel well sometimes. Hope u guys can provide some been there done that keep it moving support and advice

Nonna
02-01-2011, 05:07 AM
Hi
Welcome to WHL, try and stay calm. it's going to be hard. the less you stress the better it will be. We have a wonderful retired teacher on here. She'll be able to give you some advise for teaching, we also have active teachers, so I'm sure that Marla and Linda will be able to help you out there. Now comes my part, you have to learn to adjust your life, slowing down is the hardest thing of someone like you; but that's one major thing you'll have to do. Organizing your priorities. Like I want to do this, so i can't do that today.

Towards your friends, there's the spoon theory story to tell. I have brain fog when it comes to remembering where the links are posted; but I'm sure our great moderators can direct you. the threads and stickies are full of informations and all.

Hugs and Good Calming Thoughts are being sent your way,
Nonna

tgal
02-01-2011, 05:42 AM
Good morning willsgurl. I know this is a scary time for you but Nonna is right about the stress. The more stress you are under the worse the flare will be. It use to irritate me when people said "don't get stressed" because I wanted to yell "how can I not stress when my life is falling apart" but I have come to understand that they were correct. Stress with Lupus makes a never ending circle of pain. We feel bad so we stress because we can't do what we did before. We can't do what we did before because stress causes us to flare. It simply isn't fair!

As for your family and friends, the story that Nonna is talking about (The Spoon Theory) is what I used to explain things to my family and friends. This story can be found at butyoudontlooksick.com and I am going to paste the link below

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

I am not sure what symptoms you are having or what brought about your trips to the doctor but I want to remind you that Lupus is no longer a death sentence. It does mean there has to be some adjustments made in your life. Like you I was an over achiever and I have to tell you that this disease has meant changes to my life. It has not meant that my life is over though. Yours is not over either. You just have to adjust to a new normal.

Luckily you took a great step in finding this place. There are wonderful people here that understand exactly what you are going through. You are no longer alone on this journey because you are now a member of our family and we always take care of each other

~LUVMYFLOWERS~
02-01-2011, 07:05 AM
Hi Wilsgurl,
Welcome to WHL! Nonna, and Tgal have already given you some wonderful advice, So
i would like to say i do know what your going through, as i went through the same
feelings of being robbed of my old self, scared of what all lupus was going to do to me,
and was like i was greeveing for my old self while trying to accept the new me and the new's
that it was lupus. And trying to learn to do thing's different and adjust to the thought that i couldent run at a fast pace as i was use to doing.
So try as best you can to take a deep breath, and take it one day at a time. Ive alway's
been a hyper person, ran my own buissness worked 14-15 hour's a day in my buissness
till we sold it. T he last 7 yr's ive been home a house wife love working in my yards all day and flower bed's till startrd getting sick on and off for the past 7 yrs and 3 yr's ago lupus & sjogrens
totaly knocked me down in my track's. So i learned as much as i could about the diseases
so to better help myself on what to do to help the lupus and not to do, to help keep flairs a bay best i can, along with some adjustment's in my life on how to work around it and with it.
Sending you Gentle Hug's & Calming thought's!!!!!!! Diane,,

Peridot_Gem
02-01-2011, 11:16 AM
Hello Wilsgurl,
Welcome to our large family of the WHL and like Diane said Nonna & Tgal have welcomed you in a lovely way.

Actually being robbed of your life is how SLE can make you feel but like Nonna said depression is the worst thing for it to make it come on more.
You will feel like it's an hard task to get other's to understand only those with the Disease will actually know what your going through and you've come across a lovely group of people to understand you and help when your at your lowest.

I definitley know how your feeling i'm 42 and was robbed of my life from 18yrs old and working the lot had to stop, i've had different illness's all linked to the condition but it's only been the last 2yrs they've told me i have it and was born with it after blood tests and x-rays but i am mentally satisfield now knowing what the underlining problem to everything else was but it does'nt stop the everyday of wakening and wondering what condition my body will feel like.

There's so many threads to help you learn the condition and when your down just come on and chill out and let us know how your feeling, the worst thing is holding how you feel inside.

((Hugs)) Terri xxx

Angel Oliver
02-01-2011, 01:40 PM
Welcome Wilsgirl,
You have found a good forum here all compassionate people who can identify with some of whats happening.I know its a scarey time,but hang in there and rest when you can. I was once in a full time job,others here too.For me i had to give it up for a while,but for others ,some have gone back and happy like they used to be.So it isnt all doom n gloom.I used to be in a good job,travel the world,go out clubbing bla bla bla.For now i rest.But one day i'l go boogie again i know,because friends i met here have.You'll get through all this.Onnce you gain knowledge and chat to members you'll see life goes on,but just a little differently,slower pace.Hope this makes sense.Hope to chat with you soon.
lots of love
Amandaxxxxxx

wilsgurl
02-03-2011, 02:40 PM
Thanks so much for your support, guys. I'm i in the midst of a flare up and I feel horrible, but I'm staying positive that this, too, shall pass.

Peridot_Gem
02-04-2011, 08:41 AM
Hi Wilsgurl,
Your welcome to our support as we all know what your going through.

Sorry to hear your going through a flare up as they can be annoying besides depressing, at the moment i've got one on my neck that hit me last week and come afternoon or teatime the itching and scratching i do is like someone posessed.

I wish you all the best with it mate & try and enjoy your weekend.

Hugs Terri xxx

wilsgurl
02-14-2011, 06:32 AM
I've been feeling really depressed over the past few days about what Lupus has done to my physical appearance. My appearance has always been most important to me, and although I have SLE, my skin looks horrible. I've had acne breakouts that have left scars on my face, the prednisone has me puffy, but my hair has finally started growing back. The worst thing was when my grandmother asked me what happened to my skin because I used to have smooth, pretty skin. She doesn't know I have Lupus, so I played it off as stress. It was a really hurtful thing and I feel this is a curse. Is this kind of depression normal for Lupus patients? I know this is one of the symptoms of Lupus.

tgal
02-14-2011, 06:41 AM
Hi Wilsgurl,

As you already know depression is a part of this lovely disease. Part of it is from the disease itself and some of it is from the meds. What makes us depressed is as individual as we all. Our appearance, financial situation, loss of family and friends... the list goes on and on. You need to get with your doctor and let him know what you are feeling. He/she will work with you to try and overcome that part of this disease.

Also, always remember that we are here for you also

wilsgurl
02-14-2011, 07:26 AM
Thanks for the encouragement. I have an appt. With my rhummy the beginning of march. Question. Lately, my hands and fingers turn ice cold and a pale yellow if i' holding something cold for a few seconds or if I 'm outside for a few seconds. Does anyone else have this problem? I'm on coumadin for blood clots caused by my SLE so I don't know what's causing this prob?

lovehubby
02-14-2011, 07:48 AM
I welcome you. I too know what you are going through we all do. I like to tell myself that right know I don't feel well but Tomorrrow will be better. Because that will keep me going. I have really good days and many not so good days but they are all right when they say stress is not good. It caused my last flare and this one has been a long one. So please try to relax remember you are not alone. This is the best site to come to when you are down they know just what to say. Take Care We Are All Here For You !

Peridot_Gem
02-15-2011, 06:20 AM
I've been feeling really depressed over the past few days about what Lupus has done to my physical appearance. My appearance has always been most important to me, and although I have SLE, my skin looks horrible. I've had acne breakouts that have left scars on my face, the prednisone has me puffy, but my hair has finally started growing back. The worst thing was when my grandmother asked me what happened to my skin because I used to have smooth, pretty skin. She doesn't know I have Lupus, so I played it off as stress. It was a really hurtful thing and I feel this is a curse. Is this kind of depression normal for Lupus patients? I know this is one of the symptoms of Lupus.Hello wilsgurl,
Depression is the worst cause for kicking it off and like yourself i have manic depression hit me years ago so when it comes on at me terrible the amount of crying i do is mad but you can guarentee i start itching once i carm down, so try and keep as carm as you can and even rest with it but it will not make the situation no better.
Everything your saying about your face, scars and so on i have those and it's left me with scars but really trying to sort yourself out besides with the lupus is more important to keep your appearance up, i can't tell you what to do but just be as carm as you can. [as i know it's not easy to say but just trying to help]
Well they've just started me on plaquenil so i've got to see the effects that it gives me but i am pleased your hairs growing back, mines in that awkward stage of shortness, as mine was long and i went bald in a few places so i chopped the lot off to help it and the patches grew back.

Symptoms of lupus to help you below

No two cases of lupus are exactly alike. Signs and symptoms may come on suddenly or develop slowly, may be mild or severe, and may be temporary or permanent. Most people with lupus have mild disease characterized by episodes — called flares — when signs and symptoms get worse for a while, then improve or even disappear completely for a time.

The signs and symptoms of lupus that you experience will depend on which body systems are affected by the disease. But, in general, lupus signs and symptoms may include:

■Fatigue
■Fever
■Weight loss or gain
■Joint pain, stiffness and swelling
■Butterfly-shaped rash (malar rash) on the face that covers the cheeks and bridge of the nose
■Skin lesions that appear or worsen with sun exposure
■Mouth sores
■Hair loss (alopecia)
■Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud's phenomenon)
■Shortness of breath
■Chest pain
■Dry eyes
■Easy bruising
■Anxiety
■Depression
■Memory loss

Peridot_Gem
02-15-2011, 07:08 AM
Thanks for the encouragement. I have an appt. With my rhummy the beginning of march. Question. Lately, my hands and fingers turn ice cold and a pale yellow if i' holding something cold for a few seconds or if I 'm outside for a few seconds. Does anyone else have this problem? I'm on coumadin for blood clots caused by my SLE so I don't know what's causing this prob?Hello Wilsgurl,
Your welcome to the encouragement by we all, we just try and help as we're all going through it.
It sounds like you've got Raynauds what you stating with your hands and it comes in different degree's i have Raynauds Phenonemon which is the full extent, i'm typing this but still having to wear gloves as if not my fingers feel like they have frost bite, it's so terrible and in heat don't stop out to long my body can only hold 10mins the most and that's with 50 block on.
I also had blood clotting and was on wulfrin, a recent test as been done where i have no clots at the moment thank goodness where that's concerned and the pain and tightness of the skin.
Sle/lupus is usally inherited from parent's but is known to develope out the blue i was born with it but the sooner your able to see your rheumo the better to have bloods done more and to finally see what's going on, i'll add below about Raynauds disease and you usually see a dermatologist for that.

What Is Raynaud's?
Raynaud's is a rare disorder that affects the arteries. Arteries are blood vessels that carry blood from your heart to different parts of your body.

Raynaud's sometimes is called a disease, syndrome, or phenomenon. The disorder is marked by brief episodes of vasospasm (VA-so-spazm), which is a narrowing of the blood vessels.

Vasospasm of the arteries reduces blood flow to the fingers and toes. In people who have Raynaud's, the disorder usually affects the fingers. In about 40 percent of people who have Raynaud's, it affects the toes. Rarely, the disorder affects the nose, ears, nipples, and lips.

Overview
Often, the cause of Raynaud's isn't known. This type of Raynaud's is called Raynaud's disease or primary Raynaud's.

Sometimes a disease, condition, or other factor causes Raynaud's. This type of Raynaud's is called Raynaud's phenomenon or secondary Raynaud's. Primary Raynaud's is more common and tends to be less severe than secondary Raynaud's.

If you have primary or secondary Raynaud's, cold temperatures or stress can trigger "Raynaud's attacks." During an attack, little or no blood flows to affected body parts.

As a result, the skin may turn white and then blue for a short time. As blood flow returns, the affected areas may turn red and throb, tingle, burn, or feel numb.

In both types of Raynaud's, even mild or brief changes in temperature can cause Raynaud's attacks. For example, taking something out of the freezer or being exposed to temperatures below 60 degrees Fahrenheit can cause your fingers to turn blue.

Raynaud's

Most people who have Raynaud's have no long-term tissue damage or disability. However, people who have severe Raynaud's can develop skin sores or gangrene from prolonged or repeated Raynaud's attacks. "Gangrene" refers to the death or decay of body tissues.

Outlook
About 5 percent of the U.S. population has Raynaud's. For most people who have primary Raynaud's, the disorder is more of a bother than a serious illness. They usually can manage the condition with minor lifestyle changes.

Secondary Raynaud's may be harder to manage. However, several treatments are available to help prevent or relieve symptoms. With secondary Raynaud's, it's important to treat the underlying disease or condition that's causing it.

Researchers continue to look for better ways to diagnose and treat Raynaud's.

wilsgurl
02-15-2011, 09:28 AM
Thanks for the info. Today is a better day and now that I have some idea about what's going on with my body, these things that are happening to me make sense.

Peridot_Gem
02-15-2011, 06:22 PM
wilsgurl,
Your welcome there's so much to learn about the condition's and what you can't get off the rheumo specialist's you can definitely get it from the member's and i'm glad the info as settled your mind abit and what to expect.

wilsgurl
02-21-2011, 07:35 AM
The past week has been interesting. I visited my gynocologist and she wanted me tested to see if I have a problem with my pituatary gland instead of lupus. She thinks ot may be a pituatary gland tumor, which is easily removed. I've investigated the symptoms of the pit tumor and have more symptoms of that than lupus. I did, however, read that prednisone can cause these tumors so maybe it's an additional prob on top of the lupus. I'm staying in prayer this will soon resolve itself

tgal
02-21-2011, 08:15 AM
The past week has been interesting. I visited my gynocologist and she wanted me tested to see if I have a problem with my pituatary gland instead of lupus. She thinks ot may be a pituatary gland tumor, which is easily removed. I've investigated the symptoms of the pit tumor and have more symptoms of that than lupus. I did, however, read that prednisone can cause these tumors so maybe it's an additional prob on top of the lupus. I'm staying in prayer this will soon resolve itself

That is a good test to have. It was one of the things that was ruled out for me. Remember, Lupus is as much a disease of what you don't have as what you do have. Lupus is only diagnosed when all other options have been disproved. I am glad you have someone testing you for other things. That is a positive thing because most of the diseases they test for have some kind of "fix".

Keep us posted!

Peridot_Gem
02-24-2011, 01:25 PM
The past week has been interesting. I visited my gynocologist and she wanted me tested to see if I have a problem with my pituatary gland instead of lupus. She thinks ot may be a pituatary gland tumor, which is easily removed. I've investigated the symptoms of the pit tumor and have more symptoms of that than lupus. I did, however, read that prednisone can cause these tumors so maybe it's an additional prob on top of the lupus. I'm staying in prayer this will soon resolve itselfHello wilsgurl,
I am glad your gyno is covering a test on you for a pituatary gland besides just thinking Lupus all the time, there's quite a few lady member's on the site besides myself had to go to gyno specialist's plus tgal's been there herself by what she says.
Medication of any sort can always cause extra problems ontop for example when i had DVT they thought the Tegretol had caused it and now finding out i've had the Lupus from birth i'll never know to this day which it's connected to, the rheumo specialist thinks it's the lupus but who knows.
I do wish you all the best and please let us know how it goes. xxxxxx

Peridot20_Gem
03-11-2011, 09:34 AM
Hi Wilsgurl,

How are things going mate and how did the test go with the pituatay gland or as'nt it been sorted yet, please get back to us and let we know how your doing??

Terri xxx

Linda From Australia
03-11-2011, 10:20 AM
I am just reading this thread for the first time. I wish I had answered ealier but I have been very sick with complications from an operation over 9 weeks ago, around the time that you posted this. I have not been able to be as active on the forum as I was previously, but I will make sure that I check as often as I can so you can get the support you need during this difficult time.

Nonna suggested that I will be able to give you some advice on coping with Lupus and teaching, as I am also a teacher. Let me know some of the difficulties you are having and hopefully we can work out some solutions together.

Peridot20_Gem
03-11-2011, 10:33 AM
Hi Linda,
Sorry to hear you've not been well and i hope your abit better now from your op and your help will do wonders mate.

Luv Terri xxxx