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    dear sandy yes we have had shocking hot weather but are getting some relief in last couple of days i am sorry to hear you are feeling so unwell my friend i hope things get better with you soon i will be thinking of you take care of yourself i will be thinking of you my dear friend lots of love and hugs kiml
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    hi sandy how are you hope you are well extremely hot here today and will be worst tomorrow having trouble functioning in this heat but thats the joys of living in australia jave great day be well my friend hugs kim l
  3. Hey there,

    Glad you like the new photo album. The first three pics were taken by me, most of the others including the shot in my backyard were taken by my sister, and the really unreal sunrise and crystal clear water ones were taken by a local photographer and family friend named Tom Scott. The name Chemo is a local Indian name.

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    Oooo take care, there are a lot of crazies out there

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    Thanks for the info. I'm flaring at the moment and back on prednisone. Yuck

    hope you're doing well
  6. Hi Sandy,

    Thanks for saying hi. I have not been feeling well these past few days. Sometimes pain, and lack of sleep get the better of me. I try to just push through it all and stay positive, but some days I don't succeed. I'm exhausted, and feeling a bit down. Somitimes I'm afraid of the future, and wonder how many years will be shaved off the tail end of my life. Some people die from Lupus. Many people die from MS. What are my chances of beating both and living a long life? I don't know, so I try not to think about it. Sorry to be such a downer. I hope all is well with you tonight.

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    Sandy you commented on one of my photos about teaching a Grade 1 Health lesson. Does that mean that you are/were a teacher as well?
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    Also wants to be able to narrow my other neurological symptoms down to one area of the brain. He seems to think that some of my symptoms are being caused either by the meds or the migraines themselves. So I go back in 3 mo and see what if any the difference is. I am so frustrated!!! He did increase the gabapentin also. UGH!!!!! I just want to be normal again, if I was ever really normal, but as close to normal as I can get. So enough about me, how are you feeling? Look forward to hear from you!! (((((HUGZ)))))
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    I am dealing with it ok i guess! It really bothers me sometimes. I just got back from the University of Washington from seeing the neurologist, I guess I was hoping for a quick fix and it's going to be anything but. The Dr. told me I have to quit taking all NSAID's which I am ok with, but also wants me to stop the tordol, phenergan, relpax and compazine to stop them. He put me on a prednisone taper from 60mg down to 10mg. He says it should help cope with the migraines. The reason he is doing this is he wants to make sure that the meds aren't causing rebound headaches.
  10. Howdy,

    I'm doing so so. Had another sleepless night. Getting cold up here, summer is definitely over. The leaves are already turning. What's new with you?
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About SandyR

Basic Information

About SandyR
Psoriasis, Diabetes (Type 2), Sarcoidosis
Long Island, NY
dancing, dog walking, cross stiching, cooking
office work


As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.


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View SandyR's Blog

Recent Entries

New Photo Album

by SandyR on 06-27-2009 at 11:05 PM
I decided to start an album of my symptom pics. I am calling it This Is What I Look Like When I Flare. Obviously, there are symptoms that are just not photographic (fatigue for example) but these are selections of ones that are. I wanted a place to share with you what my symptoms look like and get feedback on them. Please feel free to swing by and leave a comment. I will try to add new photos of symptoms from time to time.

unusual worry

by SandyR on 06-24-2009 at 09:11 PM
this may sound a little weird but I am a little worried. I have a 2nd opinion appointment with a new rheumy on the 2nd and right now I am feeling soooooooooo good, that I am barely showing any flare signs. Ankle swelling, gone. Stomach has been good. Psoriasis on eyelids cured with the FML. Random rash on legs just a mere scar now. Cheeks noticeably less red lately. Energy level is up. Joints are feeling good enough to go dancing and walking again. *sigh* I realize that this is actually

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I have a blog?!?!

by SandyR on 06-17-2009 at 07:13 PM
Wow! I just realized that I have a blog on here. Cool. What to say, what to say? Tomorrow I am going to PA to see my niece graduate high school. Makes me feel very old. I am going to swing through NJ on the way home to see dad, which is really good since it's Father's Day and also my youngest brother's bday. Work was good today. Got alot accomplished. Cleaned up a ton of files. Got the supply order put away. Almost done with a report for one of my bosses. Overall, pretty good. Was tired

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