New guy here, the love of my life has Lupus
My name is Scott. My best friend/love of my life has been battling Lupus, Fibro, and Thyroid cancer for the past 2 years. The thyroid was removed now she is taking radiation treatments for the remaining cancer while battling the above. All of this being a single mom of two teenage kids....
She has some great days and some really bad ones. She refuses to slow down and her activities often cause her flare ups. She turned me onto this site but I don't think she has registered yet. I wish she would.... I joined because I want to learn more about the diseases she has and how we can maker her life better with increased knowledge.
Anyways, that's my story and that's why I am here.
Welcome to you and to the love of your life. It certainly sounds as though she has a lot on her plate. I agree with Mari that she is lucky to have someone like you supporting her through it all. Many people with lupus seem to be Type A personalities, always on the go...unfortunately it is the great catch 22 and we eventually have to slow down or our body slows us down. Guilty! (raises her hand). Anyway, welcome to WHL!
Thank you for the warm welcome.
I couldn't agree more on the Type A personality. I tell her over, and over to slow down but she just keeps going until she crashes. Her current doctor is in my opinion is USELESS!!! No prescriptions at all just tells her there is nothing that can be done. REALLY? Nothing? Her new doctor isn't able to see her until Sept. 2nd. My gosh, that's a long ways away. There must be thousands of people with Lupus here in the Sacramento area for it to take 3 months to be seen..... As for support, her family has all but turned their heads and tell her she should exercise more. Yeah like that is what she needs more physical activity. Or the say she should get out in the sun. Well the sun causes itching and rashes on her skin in just a few minutes depending on how hot it is out. She had to cover up her legs in the car the other day because 4 hours of indirect sun caused the rash to appear. I have to support her... I love her more than anything in this world and will never leave her regardless how sick she becomes. (hopefully she gets better )It took me 43 years to find the woman of my dreams and I am not leaving her side. But this disease is SO frustrating..........
The Following User Says Thank You to Tanya's guy For This Useful Post:
Rheumatologists are hard to get appointments with, but Sept is too long to wait. Any doctor who says that nothing can be done for lupus is incompetent! That's like saying there is no treatment for diabetes. Can you do some research and try to find her a better PCP, preferably an internist? They should be able to get the ball rolling with labs and at least plaquinil. If Tanya is better (on meds) by the time her rheumy appt rolls around, then that is valuable information for the doctor. It seems to me that radiation treatments might make lupus worse, because it is damaging cells. UV light damages skin cells, which triggers an autoimmune reaction, so it makes me wonder if radiation would do the same. Not that she could stop treatments, but she certainly could be started on meds to treat the lupus.
Welcome! Tanya is very lucky to have you in her life. If she is a person who needs to be in control, all her illnesses must be torture because they take away some of that control. Maybe she will have to discover that she has to slow down the hard way. You are asking her to do that without results - maybe it's a control issue and when you tell her to slow down, she has a knee jerk reaction the other way? Maybe when you get her a gift, it could be something that will naturally encourage her to slow down - like a Kindle, a movie she really enjoys, a massage, a body pillow, etc... Don't say anything about her taking it easy when you give it to her, though. One other suggestion I have is to get Tanya some lightweight, fashionable sun protective clothing. There was a thread her not too long ago where people talked about sources.
WOW! 3 hours into this and already a wealth of fantastic information. Thank you so much!
Originally Posted by Tanya's guy
I do respect you in so many ways for standing by the woman you love, as Lupus is such a difficult disease at times and can completley ware you out but you seem so contented in pushing forward with Tanya through thick and thin...well words are speechless. xxxx
Welcome to WHL and i'm abit slow on replying to your thread about Tanya but it's lovely to know she's now joined.
I do hope you and Tanya get helped very much from the members as we're all suffering the same in so many ways and your support and love goes along way and wanting the knowledge of what she's going through.
Hugs to you both Terry xxx
Last edited by Peridot20_Gem; 06-23-2011 at 10:26 AM.