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Hillbillie
03-29-2010, 07:58 PM
I have been diagnosed with lupus, I have thought I was going nuts, and I know everyone else did. Anyway after a long battle with wierd symptoms my regular doc did tests for Lupus and sent me to the Rhumy. I take Anti-Rejection anti-malaria and steroids all the time. He gave me Tramadol for the pain still I am waiting for things I have read about like the times when it does not bother you... mine still does. I am lucky to have a good feeling day once a month. Usually I just try and do the best I can. When I can I love Crafts. I do quilts, polymer clay and baskets but haven't done much lately. Anyway, thats a little about me. No one I know has lupus, no family members living with it, husband is supportive and good to me but sometimes feels like I'm alone when it comes to dealing with this.

magistramarla
03-29-2010, 08:47 PM
Hi Hillbillie,
Welcome to WHL. You've come to the right place to find others who understand what you're going through. It seems that you have a good PCP and Rheumy who are starting you on the meds that you need. Give the meds a chance, and you might start to notice a difference. If not, work with your doc to figure out which meds and which dosages work the best for you.
Read any threads here that interest you, especially the stickys. You can learn a lot. Most of all, come back and chat with us. There is usually someone here who can answer your questions.
Hugs,
Marla

rob
03-30-2010, 06:48 AM
Hi Hillbillie,

Welcome to our group. It sounds like you are on the right track for feeling better. You have a definite diagnosis and are on meds, this is good. I have both SLE and MS, and I have between 3 and 4 good days a week. It can take time for the anti-malarial (plaquenil) to work, so keep taking it and have patience. If all goes well and you avoid triggers like sunlight and high stress, you should start to feel better soon. I have hobbies I love too (r/c planes, models), and I'm able to enjoy them both despite the Lupus and MS. Just hang in there.

Rob

Saysusie
03-30-2010, 01:14 PM
Welcome to our family;
Most of us know exactly what you mean when you say you are lucky to have one day a month where you feel good. Unfortunately, there are many of us who do not even get that one day:no:
You will find that this place is filled with people who truly understand and who want to help you in any way that we can. Being newly diagnosed with this illness can be very frightening, but it is very possible to live a relatively normal life with Lupus. It is important that you make the appropriate lifestyle changes (like avoiding the sun and ultra-violet lights, avoiding undue stress, eating healthy, exercising regularly, take your medications as prescribed, and getting appropriate rest periods), learn as much as you can about this disease and how it affects you, and do all that you can to avoid flare-ups.

Please know that you are not alone and that we are all here to help you. Again...welcome to our family!!

Peace and Blessings
Namaste
Saysusie

Hillbillie
03-31-2010, 08:05 PM
Thank you so much for the warm welcome. I do try to make light of it all... first thing the doc told me was to be sure to take a nap every day... I love to take a nap so I figured that I might as well have this than something else.At least now I can say I take a nap per dr orders!! Its good to find a place to find others that have a similar battle. I am a upbeat person most all the time. I just needed to find somone that understood... I think its the right place. Thanks again,

Hillbillie
03-31-2010, 08:11 PM
Thanks Rob,
I have been on the meds a while and just the past couple of days I have felt better than before, so I am thankful for that!! Even made it off the porch and out to play with the grandkids a little. Still have pain but bareable. Spring is my favorite time of year. I love the blooms of the flowers and fruit trees. Makes everything see like its coming alive. thanks again... My husband loves the r/c helicopters Thanks again Billie

debbie-b
04-02-2010, 05:00 AM
Hi Billie,

I too, would like to welcome you to this awesome forum. This is THE place, to find understanding, compassionate and caring people, you will soon become your friends or even your family.
Since you said that you went out to play with your grandkids, I assume that you have been dx later in life, just like me.
Which I think, is somewhat easier, because we don't have small children to take care of, like so many of our younger fellow lupies. I couldn't imagine to deal with the lupus pain and children at the same time. I don't know, how these young mothers do it.
How long have you been on your meds?

Debbie

teresaa40
04-02-2010, 05:10 PM
Welcome, you are in just the right place. Grandkids, huh? How many? I have 5. Love em bunches but just don't get to see them much, they all live too far away.

This has been such a wonderful place for me, especially when I felt like my life was in the middle of a cyclone, and I needed something stable in my life to grab hold of. Everyone here has held my hand, talked me down, cheered me up, and given me a place to vent where I felt safe to say what I needed to say. I think you'll find it to be a great haven from the storm, and a fun place to just hang out when you are looking for a friend that really gets it.

mountaindreamer
04-03-2010, 04:10 PM
hi billie,

sorry to be late, but i also want to welcome you to the group. as you can already see, this is a great forum, and the members make is that way.

i am so glad that your husband is supportive, that is a comfort to you.

I too am a grandma...mine are 7 and 6 with another due in June.

Hillbillie
04-04-2010, 09:48 PM
Thank you, Two grandkids boy age3 and girl 5. They live about 10 min. away so I see or talk to them nearly everyday. I wish I had more 'good' days to give them. I always wanted to teach them all about things I know gardening, flowers and my love of of walks the woods. So I substitute and show them in books,write down important things that I think will help them later in life. Then we plan the few days I feel good and I can actually go out and be outdoors with them. My parents wrote a lot of things down for us about how they were raised and how they did things. It has really helped us all. Hope to do the same for my son and grandkids.
Thanks for the reply. So far the people on here seem to be the greatest!!! Billie

Hillbillie
04-04-2010, 09:54 PM
Thank you for the welcome. I believe it is a good place to come to and feel understood! I too am pleased to find more Grandmothers...I was told I was old to be diagnosed. Made me feel like the female version of the lone ranger! My babies are one boy age 3 and one girl age 5. They are not little babies but they're still Granny's babies. I bet you are excited to have another little one to love. Once they go to school seems like they grow up overnight. Thanks again, Billie

rob
04-05-2010, 02:44 AM
Thanks Rob,
I have been on the meds a while and just the past couple of days I have felt better than before, so I am thankful for that!! Even made it off the porch and out to play with the grandkids a little. Still have pain but bareable. Spring is my favorite time of year. I love the blooms of the flowers and fruit trees. Makes everything see like its coming alive. thanks again... My husband loves the r/c helicopters Thanks again Billie

What a coincidence! I'm into helicopters too. I fly a machine called a Raptor 50. Learning to do aerobatics, it's nerve wracking!

Rob