View Full Version : First time here - Hello from Washington state!

06-11-2013, 12:44 AM
Hi - my name is Judy and I am happy to have found a place to talk about lupus. Though I have a wonderful family and supportive circle of friends, I worry that talking about this condition too much may alienate people - I mean, even I get tired of dealing with the symptoms and sometimes feel like I just don't want to deal with them anymore. My symptoms impact my loved ones and that really bothers me. I used to be so outdoorsy - played softball into my thirties, and coached my daugthers' teams, played volley ball and bocce, and since I grew up on the beach, loved swimming in the ocean. But, for the last 12 years the symptoms have progressed, and for the last two years I can't even go outside on a sunny day because no matter how I try to care for my skin and protect myself, I break out in a horrible rash that not only looks horrible, it itches like crazy. The second day of the rash I generally start feeling the achiness and weakness - headache and inflammation in my lungs. Usually, it all goes away after 5 - 10 days, and that's how it was this last time, but the problem is, this time the rash never completely cleared up, though I felt very good - but, after a 10 day bout, then four day remission, I have the rash coming back with a vengeance. It's so, so frustrating because I thought I was really careful this time. I went to yard sales with my grown daughters and husband and we were having so much fun. I wore a big sunhat, long sleeved white shirt, and sunscreen... and on top of that, used my umbrella! That was Saturday - this morning, I woke up scratching my arm and saw the red bumps had returned. I'm worried that tomorrow I will start feeling sick, like I always do on the second day - and, I JUST got over a flare less than a week ago. Ugh!! It's so hard for a person who loves the outdoors to stay inside all day long... I realize that so many people have diseases that are more devastating than mine is right now, but it is very difficult to look outside and know that I can't even get in my car and drive any place because no matter how I try, I can't stay completely out of the sun. Today UPS delivered this tinted window covering material that cuts 98 per cent of the UV rays, and since we have skylights in the house, and a huge wall of windows in the living room, I'm hoping this will help cut out some of the rays getting into the house. My son is going to come over this weekend and help my husband with the applications - Yet another weekend where my condition interrupts the people I love... though, they never complain and are extremely supportive, my independence feels completely compromised. The other day a friend of my husband's said, "Judy, you need one of those bubbles..." How many times have I heard that? My allergies are so out of control. Darn. I sound like a total complainer. That's really not who I am, generally - it's just been a tough month. I am a usually happy artist - wife, and mother of four - grandmother of five, and great-grandmother of one 4 month old. My family is the center of my life... kids ages between 23 and 46, and a gem of a husband. I love to draw, paint, read, play word games, work out in my hot tub, and hang out with my friends. I lead two wonderful book clubs - of 18 friends, and worked for the school district as the art enrichment chairperson, and developed reading programs in conjunction with corporate sponsors. I was also the volunteer coordinator for many years - a job that brought me many wonderful friends. I love picking up my grown daughters and going for coffee or just hanging out together. We used to go for walks, but now, I have to stay indoors. That's just how it is. I would love to hear about others and find out what you do about the times you have rashes and ache everywhere. My kids got me a nook because it actually hurt my wrists to hold heavy books. How about you? Thanks for reading this - it feels good just to get it out there. Oh, one last thing... I have been unable to find a doctor who helps me feel better... except for my wonderful MD. The three rheumatologists have all sucked. Have you had any luck? Take care... Judy in Seattle

06-11-2013, 07:44 AM
Funny that you mention the nook. I do almost all of my computer stuff on my phone because my laptop is too heavy and hurts. I so get that! Then when I have eye issues I am in a mess!

Welcome to the family and don't worry about complaining. It is what we are here for. It is wonderful to have loving, supportive people around but no one "gets it" quite like people that have it. We are here for you. Make yourself at home and welcome to the WHL family

06-11-2013, 08:04 AM
Welcome, and hello, neighbor... :-)

Feel free to come vent to us any time.

06-12-2013, 02:27 AM
Hello from the U.K :)
I have been diagnosed with SCLE after 16 years of suffering from skin lesions all over my body after being out during daylight, and I am glad I found this site! :) I am having ongoing tests and visits here and there to find out if I have actual SLE...I have no idea what the U.S medical system is like, other than you have to pay for it (that must be very hard for long term illnesses, and wonder how you guys cope?) But here, its free, and rather slow :( We are just an NHS number, and have to explain you're whole life story on each and every visit!! and yes!! they sit there with all the notes!! (well, I must say, my notes tend to arrive in a trolley all of its own these days! I have to laugh... otherwise I would probably cry!!
Judy, I know how you feel...family are great, but up to a point. sometimes I fear that they really don't believe that I suffer at all, apart from my skin, witch is obvious!! I also care for my dad, who lives with me, and I have 3 teenage sons, one of whom is adopted, as his mum was a great friend of mine that we sadly lost to cancer. And we all live in a 2 bedroom house! so, definitely need a place to chat...and hope its not an all "doom and gloom" site (like some have turned into!!) as, despite everything, I love a good laugh!! :)

06-13-2013, 08:52 AM
Welcome Judy and beki-roxanne:
Beki; you are definitely in the right place if you were looking for a site that is not all doom and gloom! Our family here is full of people with a great sense of humor as well as genuine care and concern.
I am glad that you both found us and that you joined us!

Peace and Blessings

06-14-2013, 12:18 AM
Here is a great thread if you want to laugh. We have music threads and all kinds of things. Yes, we talk about our illness but you have to admit it can be funny!


06-15-2013, 06:19 AM
Welcome Judy I'm also in Washington State. Nice to have a neighbor. I can relate with the outdoors. I love being outdoors hiking, gardening, boating, camping a new hobby kayaking. This time of year in the PNW is beautiful I couldn't imagine living anywhere else. The problem I face is and it's stupid just change my habit really. When its sunny here and cool I never think to put on sunscreen. It's been pretty nice lately I have been doing a bit of gardening and noticed about an hour my skin was stinging. The exposed areas. This is new maybe I felt it last summer but nothing like this. The top of my feet burned in just hour outside at about 11am. My cheeks looked like a clown bright red patches. The cheeks I noticed last summer. We go to priest lake Idaho every year for vacation. We are going in August this year. We rent a cabin on the lake for a week and bring our boat and kayaks. I am so worried about going now. I'm thinking some of it is medication related and some is the lupus. Well again welcome I have gained so much insight being here. So much support. I don't post a whole heck of a lot but I do log in a few times a week. Take Care.