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Adventure Racer
04-02-2010, 03:46 PM
Last Friday, I got the official diagnosis. Even though 6 months earlier, I had been diagnosed with Undifferientiated Connective Tissue Disease, this official SLE diagnosis felt like a punch in the stomach. Once I got over the initial shock, I realized how lucky I was to get the diagnosis in only 6 months. Reading all of the threads on this forum, I see so many of you suffering for so long, without ever having true answers!
I have been on 400mg Plaquenil and 50,000 IU of Vitamin D for the last 6 months. For the last 3 months, I have been on 5mg prednisone daily. When I went back to the rheumy Friday, he saw the pictures of my "dead hands" (Raynaud's), and of all my red face rashes, and the major swelling in my hands, wrists, and ankles. Then I heard the words..."At this point, there is no doubt you have Lupus". Wow. So now what. So now, I have to face it. So now, I have to accept it. So now, I have to adjust my life style. So now, I have to listen. Listen to my doctors, listen to my family, listen to my friends, and most of all, listen to my body! No more pretending it will pass. No more pretending nothing is wrong. It has a name. A name made it real. What sense does that make?? Was it not real when I could not walk from the pain in my ankles? Was it not real when I couldn't bend my fingers at all from the swelling? Was it not real when I had such brain fog I couldn't even tell you what the weather was like outside? Was it not real when i coulnd't brush my hair without resting inbetween strokes?
What sense does that make? But now there is a word. A name. Lupus. Something to understand, something to accept, something to "explain".
So today I start Methotrexate. And we pray it doesn't damage my one kidney, as I only have about 30% kidney function as it is.
I've had a week to digest. To read. To think (and thankfully after 6 months of Plaquenil, i CAN think again!).
And I have realized I am truly one of the lucky ones. I didn't have to battle an unkown for years. I didn't have to go to doctor after doctor after doctor for year after year, looking for answers, looking for help, looking to feel better. My battle is here, it is now, and I'm equiped to fight it! Lupus, you will not win.

Methotrexate day today. 10mg pills. Praying it is manageable, and i soon find relief.

rob
04-03-2010, 12:11 AM
I told someone here a few days ago, that I wanted to give them an award for the best written post. It was really something that said it all. Something that expressed what I often times cannot.

Well, this post, Adventure Racer, is another award winner. When we finally are able to name our enemy, we rejoice that we finally have an answer. We finally have a name to call this elusive enemy. We are actually happy to know what we have. Then, we turn and hate this enemy. We long for a name, then fight that name with everything we have.

You have said so very clearly what I feel, in words that I have a hard time putting together these days.

Well said, and well done. Thank you.

Rob

Angel Oliver
04-03-2010, 08:01 PM
Isnt it sad what im about to write....Im so happy you have the Lupus diagnosis!!!! I know to the untrained eye this would sound so very bad,but i know you understand exactly what i mean.I long for the day i get a name for my ''lazy'' illness with most of the above symptoms.But so very happy you have the dx and now can get the correct meds and help from the right doctors to finally manage your illness and hopefully in time feel much better than right now.Sending you gentle hugs.Im so glad you found us here.

lots of love
Amanda.xxxx

BonusMom
04-04-2010, 12:53 AM
Welcome to WHL and thank you for putting the thoughts I've had for the past 17 months in to words that so eloquently describe the diagnosis.

rob
04-04-2010, 07:31 AM
Isnt it sad what im about to write....Im so happy you have the Lupus diagnosis!!!! I know to the untrained eye this would sound so very bad,but i know you understand exactly what i mean.I long for the day i get a name for my ''lazy'' illness with most of the above symptoms.But so very happy you have the dx and now can get the correct meds and help from the right doctors to finally manage your illness and hopefully in time feel much better than right now.Sending you gentle hugs.Im so glad you found us here.

lots of love
Amanda.xxxx

It's not sad at all Amanda, just realistic!

Saysusie
04-05-2010, 10:02 AM
Every post here has been well written and I have to agree with Rob, yours said what we all have felt in such an eloquent way; to the point, realistic, honest, and heart-felt.
As Angel said, I am glad that you got a diagnosis so quickly and that your treatment is starting immediately. We all understood exactly what she meant when she expressed her happiness for that!
So, I agree with Rob, your post is an award winner :yes:

Peace and Blessings
Namaste
Saysusie

Nonna
04-06-2010, 07:08 PM
Hi and thanks. You must have some writer in you. It was so well said...... that I can't describe. I feel , I felt pretty much the same. It was so great to finally have an answer as to why.

Thank you and welcome.
nonna