View Full Version : Aloha

07-08-2009, 02:46 PM
Having a junkie day, fever body aches and rash. Thank goodness this is not typical for me. Get it once or twice a month. But it does make me read about lupus and thats how I found this site. Diagnosed with lupus in 2000 after having a stroke. Turns out had vasculits of CNS, legs and lung. Also Antiphospholipid Syndrome (Luckly they figured it out and gave me high dose steroids (yuk) and then 2 years of chemo.) No residual after couple of months and was able to go back to work in a month. Hospitalized again in 2006 with it in my lungs but the nasty drug pred did its job. Currently in a mild flair manly fitigue body aches and fever with some hemopytosis. On cell cept and plavix with ASA, along with my drug of choice motrin. Trying to avoid pred.( love and hate that drug) and if the aches get real bad percocet

Still work full time as a RN in a busy hospital. Play with my dogs, travel when I can like in 2 weeks. Hit the beach in the evening sand enjoy life

07-08-2009, 04:07 PM
Aloha Mew808...and welcome :wavey:

Glad to meet you! I'm Lori. Just wanted to welcome you to the site....glad you decided to join us.

Wow....you've really been through it. I have to agree on the Pred...hate and love it...in that order. It's kept me alive more than a few times, though.

Glad to hear your flares aren't frequent or debilitating. Painful and annoying are more than enough.

I've been to Maui four times now and have often thought, if I had to live anywhere while having Lupus....it would be Hawaii. That is, if I had my choice about the matter. You'd find me there hiding out in the air conditioning during the days....hanging out on the beaches and in the surf, the rest of the time. With an occasional trip to the top of Haleakala, of course, in between.

Looking forward to hearing more from you.... :veryhappy:


:cool2: Lori

p.s. sorry you're having a junkie day....

07-08-2009, 05:26 PM
thank you for the warm welcome, just noticed your address. Going to Cannon Beach for a couple days to sight see. looking forward to it

love maui to esp when the whales are in town


07-08-2009, 05:42 PM
Aloha and welcome from another member who loves Hawaii.
I've been to Waikiki twice, and we've driven all over Oahu. The very best part was finding grilled shrimp and sweet corn being sold out of a colorful old truck on the North Shore, not far from Turtle Bay Resort. We've promised ourselves that the next time we go, we'll try to see other islands. Usually we've been there because my hubby had business at Hickam AFB.
I'm glad that the Lupus doesn't keep you from hitting the lovely beaches there. I hope that you use lots of sunscreen!
We're about to move to Monterey, Ca., so I'll be living on a beach, too!

07-08-2009, 07:46 PM
Aloha mew808,

welcome to our world-wide family.....you will find wonderful friends here, and so many members with specific knowledge about the many questions surrounding lupus.

we have many members who are nurses, and i am sure they will be along very soon.

Been to Hawaii once for a family wedding....loved the island, the nature, the beauty, the people, etc....but had serious issues with McDonald's selling Spam and Eggs for breakfast....i was not ready for that one.

07-08-2009, 09:22 PM
thank you for the warm welcome, just noticed your address. Going to Cannon Beach for a couple days to sight see. looking forward to it

love maui to esp when the whales are in town


Excuse me....Cannon Beach???? Are you in Oregon right now? Or are you heading this way? How do you know Cannon Beach?

I know all the beaches in Oregon..North of Newport..like the back of my hand. Spent many summers exploring them. My favorite things about Cannon Beach are Mo's Clam Chowder and the view and awesome pictures with Haystock Rock in the background....especially at sunset.

Let me see if I can find a pic....so everyone can see >>>>>>

http://www.captainhops.com/wp-content/photos/thumb_haystack_rock_cannon_beach.jpg (http://www.captainhops.com/wp-content/photos/haystack_rock_cannon_beach.jpg)


:cool2: Lori

07-08-2009, 10:12 PM
I will be there 8/4 will have to stop and get dinner there. Never been there just like the photos and the info i found so will be there for just 2 days and sight see. LOVE the PHOTO

07-08-2009, 11:10 PM
I think you'll love it...it's a great little town. And our beaches are absolutely beautiful!

I sure hope you get good weather for your visit....you have a pretty good chance of that if you're going in early August. Most of August is really nice weather in Oregon...at least it has been the last few years.

If you get a chance, search out Mo's, for some of the BEST clam chowder ever. There are plenty of good restaurants in Cannon Beach and the town has some really nice art galleries and shops....lots of antiques.

Are you traveling through Oregon to a destination further South? Or just hitting some spots in Oregon?

Glad you enjoyed the picture.... :veryhappy:

Take care,

:cool2: Lori

Angel Oliver
07-09-2009, 03:10 PM
Hello and welcome.Sorry to hear what you have been through and going through ,but wow....what id do for a beach right now lol.Glad you found this site,full of wonderful members caring and understanding.Love the photo Lori.
Hope to catch up with you soon.


07-09-2009, 07:03 PM

thanks for sharing the picture....reminds us of exactly how incredibly beautful and empowering nature can be.....the imprint of this picture on my mind will help me have sweet dreams tonight.

you are the absolute best.