View Full Version : This is my first day on here

08-04-2008, 06:14 PM

This is my first day on this site...it is nice to know that there are people out there that deal with the same day to day things that I do...I am 23 yrs old and was diagnosed at 17, but my lupus became active at age 19. Now I have to take 10-12 pills a day just to get through the day...what kind of life is that really...I can't do anything at the spur of the moment cuz I always have to go home to get my meds first...I'm having marrital problems because I don't have energy to do all the things my [b]my husband wants to do...I just live day to day...trying to get by and thanking god for every day I am able to get out of bed and live my life...I am hoping that I will learn a lot from this site...please write if you have any suggestions for me...*Thanks..]


08-04-2008, 09:27 PM
Hello and Welcome Lindsey :lol:
I am sorry to hear that your illness is causing problems in your marriage. It is very important for our loved-ones to be educated about our disease so that they can understand how it affects us. It is equally important that we, ourselves, be educated about Lupus, its medications, its treatments, is co-existing diseases (such as Raynaud's, Fibromyalgia, Sjorgen's, and recently happening more often, MS, and others).
There are some very good books that you and your husband can read. The quintessential Lupus book is: "The Lupus Book: A guide for patients and their families", by Daniel J. Wallace.
Also, there is a web site known as "butyoudon'tlooksick.com". On that web site is an article known as "The Spoon Theory". It is a very clever, but effective, way of explaining how we feel, day-to-day, with Lupus! You might want to print it up and let your husband read it.
You mentioned that you take 12 pills/day to manage your symptoms; Sweetie...I take 18 pills/day and there are some members here who take 20 or more! It is a part of the process that we deal with. I know it gets to be a daunting task to have to down all of those pills, every day, each day, no matter what! but we MUST do it.
I keep a small pill dispenser in my purse so that, in the event an unplanned activity comes up, I always have 2 days worth of my medication with me at all times (yes, that means that I carry 36 pills with me all of the time!). If I have to take some of the medication, I always re-fill my dispenser! You might try this so that you don't have to always run home to get you medicine! That, alone, might free up some of the stress that I hear in your post. You have to know that stress is our worst enemy - it can do irreversible harm, up to and including causing our symptoms to be so severe that we must be hospitalized! You do not want that! So, please, try to do what you can to lessen and/or eliminate your stress.
This community here is a family and everyone here is more than willing to provide you with advice, support, understanding, and comfort. We are all glad that you are here :lol:

Peace and Blessings

08-05-2008, 07:58 AM
HI Lindsey,
I am sorry to hear that you are having marital problems. I hope that your husband can come to understand your illness. I think Saysusie gave you good advice about the medication problems. We all have to make some changes in our lives to keep as healthy as possible. I hope that you keep posting.


08-05-2008, 10:04 AM

You are in a difficult spot. I dont know anything about your marital problems. What i do know is that as emotional as this is on you its twice as bad on someone who loves you. They see the person they love with this terrible disease and there is nothing they can do to make it better. I have been married almost 16 years. My husband is very active. We camp, canoe, fish - all the outdoor sports. When he finally understood i wasnt going to be able to keep up anymore it was overwhelming for him. Thats when he realized how serious this is. It took a while but now he gets it. He is so supportive now. I pray that things work out for you.


08-07-2008, 12:44 PM
Hi Lindsey...

Welcoming you with open arms...

I know Lupus can affect our relationships, spouses, children, friends. It happens to all of us. If you want to talk about it, your relationship I am here, we are here. We have love, understanding in all areas that Lupus affects, not just our physical self. We are here for you...

When living with our disease in the day, by the day...and always having faith and hope, it makes the day not seem so bad. Believing, reading, searching, researching in a book, in ourselves helps us to find coping skills to alleviate the stress that the disease loves.

Married 6 years....still learning, still finding a place for my disease. Most days it fits in, many days it doesn't. I am, we are a work in progress..

Be well,

08-18-2008, 03:33 PM
Hi. It's sometimes hard to know what to say to someone. I have days that are difficult also. Sometimes, it was physically difficult to get out of bed. As you can see from my post, my boyfriend wasn't supportive at all and he left. But, my friends have been very supportive. So, keep me posted. I'll be rootin' for ya!