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Are You Ready for - Stefanie?!!!	My Life Is A Never Ending Story!

wolfgirlstefanie
read my profile sign my guestbook Name: Stefanie Birthday: 2/13/1984 Gender: Female Interests: Books, writing, music, crafts, hockey Expertise: Weddings, Homopathic Healing Occupation: Wedding Planner/ writer Message: message me Yahoo: lupusgirlstefanie MSN: stefanie_4eva@hotmail.com Member Since: 11/20/2006

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Sunday, December 17, 2006

Ok! What Is This Lupus Anyway!??

What is Lupus??? A few people have noticed and I guess have been reading my blogs (GET A LIFE! LOL kidding)

Well here is my story!

I was officially diagnosed with Lupus SLE in 2005 however it was a suspicion of my doctors even a few years earlier than that. So in March of 2005 I found out that all this pain and being sick all the time wasn't in my head as some people had thought but that there was a disease out there that was known as Lupus. I had to go through some quack doctors and some even quackier diagnosis before lupus. One doctor had convinced himself that what I was experiencing was Lukiemia and then when he tried me on some treatment (pills only) I wasn't responding (NO KIDDING) and he said it was the worst!!! Ok so then I fired him! And found a new doctor and she took the time and effort to run many, many tests instead of just one or two before making a clear diagnosis.

Not long after she said she suspected lupus but my ANA was low and she would wait. Well a year went by and she waited and slowly one of my kidneys began to become infected. Not long after we found that my ANA shot through the roof and she said YUP it's lupus so I went on some pretty hard core treatment that was the pits and after time it did help. Then I had another little set back with my heart becoming inflamed and so more pills, then that was ok and for a long while I was doing very well.

Now I'm afraid I'm going back into a flare so more meds again. That's the life of lupus it's a BIG roller coaster that goes up and down and you have good days and bad days.

Here is a little bit about lupus.

Lupus (systemic lupus erythematosus) also known as SLE Lupus is one of the most common types. This type of lupus effects the internal part of the body. The body of someone with lupus becomes very confused and sees all of the body's health tissue, organs and cells as harmful invaders and begins to attack them. This can result in very serious organ damage, joint pain, muscle pain etc........ Basically you are being eaten alive from the inside out.

What Are the Symptoms?

The following classification of 11 symptoms helps doctors tell the difference between people who have lupus and people who have other connective tissue disorders:

Malar (MAY-lar) rash (a butterfly shaped rash over the cheeks and across the bridge of the nose)

Discoid rash (scaly, disk-shaped sores on the face, neck and/or chest)

Sensitivity to sunlight

Oral ulcers

Arthritis (pain, stiffness in joints)

Serositis (inflammation of the lining around the heart, lungs, and/or abdomen, causing pain and shortness of breath)

Kidney problems (protein leak)

Central nervous system problems

Blood problems (anemia)

Problems with the immune system (risk of infection)

Antinuclear antibodies (autoantibodies that react against the body's own cells)

Other symptoms include:

Anemia

Fatigue

Fever

Skin rash

Muscle aches

Nausea

Vomiting and diarrhea

Swollen glands Lack of appetite

Sensitivity to cold (Raynaud's phenomenon)

What causes Lupus? Well that we are all unable to answer the cause is unknown, some thought it was genetic and while genetics do play a roll in it for some. There are many like me who's family has no family members with it. It is believed that those with lupus are pre-disposition to it and some form of extreme stress, or trauma will cause a trigger and it will begin to awaken.

Lupus is one of those diseases that is not as well known out there so many people are not aware of it and don't know it's effects.

Lupus can be deadly, often organ damage is the leading cause of lupus deaths. Kidney failure, heart failure as well as lung problems and other organ failure is the cause of death. People do die of lupus although the prognosis is much better today then it was even ten years ago. Ten to twenty years ago people with lupus were given five years to live where as now that has more than doubled and some have lived well into their forties and fifties and even some into their sixties allowing a more well lived life.

Lupus reaserch is coming along but because people are more un-aware of it it tends not to get as much money or as many grants aloted to it. So it's our job to see that the word is spread about this disease. My goal and my dream is that someday soon a cure will be found so that those of us suffering with it can expect a normal long life!

For more information or to donate go to

www.lupuscanada.org

www.lupus.org

http://www.lupusresearchinstitute.org

Thanks everyone for all your support!!!

Love

Stefanie

2:32 PM - 1 view - add eprops - add comments - email it

A week of Liquids!

Well Today I'm starting my liquid diet! EWWWWWW and this isn't a diet for vanity reasons this is given to me by my doctor because I'm convinced she has nothing better to do LOL.

Actually my intestinal wall (gross I know) is inflammed and so to ease the pain for a whole week I can only eat or in this case drink liquids, well for the first three days then I can have minimal food and only certin kinds, no salt, basically just dry toast and baked potatoe (plain, that should be outlawed!!!!!!).

Anyway this morning I did bad I had my friut drink and a tea but I had bread and cheese (ok sue me) but no lunch and I am just drinking water now!!! I hate this I mean my life is tough enough with lupus you don't have to throw in a liquid diet a week before christmas for goodness sakes.

But this is me complaining before the extream nausea kicks in later and then I'll be crying that I would do anything to get rid of it and a liquid diet is what I must do!!!

Last night we had a BIG family get together and I had a great time and enjoyed the food since I knew it would be my last meal until christmas LOL, well this morning I did bad, but so long as I don't eat another thing for the next three or four days I'll be ok by christmas and then I'm enjoying FOOD!

Have I said it yet LUPUS SUCKS!!!!!!!! I mean it really doese as if living daily with the aches and pains isn't enough I get other problems too and have to forgo my food.

Sorry I'm Italian and taking away my food is not a good idea!

So here is my diet for today (or was supposed to be )

Breakfast - Weak tea, juice (no sugar added) or soup. Then I have to drink 500ML of water before lunch!

Lunch - Weak tea, or juice, with soup then 500ml of water before dinner

Dinner - Soup with four crackers, weak tea or juice, then 500ML of water before bed.

Bedtime snack (lol) - weak tea, or juice and a glass of water.

This is my life for three or four days.

Then this is the diet!

Breakfast- weak Tea, or juice with a slice of dry toast and 500ML of water before lunch

Lunch - Soup with four crackers, weak tea or juice, and 500ML of water before dinner!

Dinner- Soup with one small boiled or baked potatoe plain with a touch of salt and weak tea or juice, then 500ML of water before bed. (or I can have white boild rice EWWW)

Snack - 4 crackers with tea or juice and a glass of water.

This goes on right until the day before christmas so the 23ard of Dec, then I can add some chicken, or fish and eat toast with a bit of jam or butter. Then i'm done!

So the theory goes that after this my liver, kidneys and tummy will have cleaned out leaving me feeling fresh and HUNGRY! lol

Oh well I'll let you know how it goes! Thank God for my boyfriend who keeps me happy and sane through all this and who is my goal to keep going, I'll be seeing him on the 25th so there is a light at the end of this tunnel!

Take care everyone!

I'm gonna rock and roll!

Stef!

2:10 PM - 2 views - add eprops - add comments - email it

Friday, December 15, 2006

Rant and Rave!

Ok well today was ANNOYING!! As to be expected somedays when you have lupus. It's funny no matter how long I've had this it's still new to me when I have a bad day LOL.

Ok so I woke up and had to drink 1.5 liters of water in half an hour because I had to have an ultrasound. For those that don't know what that is it's an internal picture of your tummy and organs. BUT!!!!!!!!They make you drink so you fill your bladder and then have to pee like a race horse. Then they stick you with a cold scanner looking thing and the stick you hard and expect you to hold the pee in for like half and hour. I wanted to scream and ram the lady's head into her machine. However, I thought to myself "now stefanie slamming the lady's head into her machine is counter-productive!" So I opted to bite my lip and stay quiet

Then after that I was off to bake cookies with my aunt which includes tasting the cookies so it's all good, and thne it was home. Baking is hard work and although I love it and find it so relaxing because of all the poking of the ultrasound lady I was already sore and my body was screaming to lie down. Of course I denied it that pleasure and it's 11PM and i'm still up writing this stupid blog (I am so lame to have a blog and even more lame to post t it on facebook for everyone to see, guess I haven't changed much still lame LOL).

It was kinda scary in the ultrasound room since they had to call in another person it looked as though she saw something but of course they'll act all weird but they can't tell you anything. So my doc called me the same day and tomorrow I'll get my results. According to the other one my kidneys are inlfammed and I guess this will tell me if and how much damage was done to them. Lupus really sucks I'm telling you!

Well I have to rock and roll and take my last batch of pills and then in half an hour I'll be to loopy to write! That's another rant all in itself the amount pills I have to take, in the morning, in the evening, before bed awwwww it makes my head spin!

Anyway I'm rocking out!

love and hugs

stefanie

11:10 PM - 1 view - add eprops - add comments - email it

Monday, November 20, 2006

It's me!

Well this is my first post! Let's see Life in my shoes is pretty dull right now but yet never boring. There is always something coming at me at a million miles an hour. When you live with a Chronic Illness you learn that life is full of lemons and they're all rotting.

But as hard as life is at times you realise that it's all worth it in the end. Why? I don't know it just is. When I see snow falling and landing like a white blanket on the grass, or when I see my friend's two baby twins gigiling I realise that life is life and it's good. Sure we all have our rough angles and crosses to bare (oooo I can't stand cliches) but in the end the good times will always out weight the bad.

K this is a little deep for my first post but oh well

I'll add more later!

Take care everyone

5:06 PM - 6 views - add eprops - add comments - email it