For me I find the fatigue is worse. I can take medication for the pain, or mentally deal with it but there doesn't seem to be any medication that deals with the fatigue. As a mother all my energy goes to my daughter and when I can't do what she wants, or when I can't participate in playing as much as I would like to it is upsetting. Then after she goes to sleep for the night to fit in laundry, dishes, etc. I am exhausted! Being a mom is the hardest job in the world, but having lupus makes it harder.
It is so funny, just the other day my mother said to me "Christine, maybe it is not lupus this time... maybe it is allergies." It made me laugh because I think that I always assume it is lupus. She made me laugh because her allergies have been driving her nuts, giving her headaches and making her tired. She reminded me that we all have bad days, and with lupus I must have it harder then most because I have to deal with that too. She reminded me to give myself credit!
I sometimes remind myself that doing one thing is still better then nothing. There are times when brushing my teeth is the only thing I feel like I got done that day!
But the other days, when I push through and get a lot done, I feel good. We lupus paients have to deal with more then most, so yes I agree... we do need to pat ourselves on the back every now and then!
Wow, I don't know how I missed it but boy this thread was busy!
I guess it goes to show that we all at times have similiar feelings of guilt, feeling like a burden, feeling useless etc. I really think that is why message boards like this one are so important because we can reach out to others who can truly understand. Sometimes I think that only people who have been in our shoes can really understand how we feel. But because people in this community can identify with each others feelings, we can also help lift each other up. We can share tips, remind each other of positive things, and make each other laugh. We can be each others support system!
I always said that someone should make a greeting card line for people who are chronically ill or their caregivers since there unfortunatly are so many of us in the world. Well, someone did it! I was in the store the other day and saw that Hallmark made a perfect card that had a picture of a girl hugging this huge boulder of a rock The inside said "Thanks for being my rock". So simple. It was the perfect card for my parents to let them know I appreciated the help they have been giving me through a tough personal time lately.
Sometimes a little note of thanks is all it takes.
As I re-watched the dating video I remembered some of the scenes that didn't make the final "cut" of the video. One of the conversations we had was how you kinda can't decide how you will react or how you will treat the "lupus" subject in advance of a date. Just like every date is different, every person is different. If you are having great conversation, and everything is flowing naturally, youmight decide to tell the other person you have lupus as a part of that honest conversation. If the date is a dud, you may decide it is not worth your time, energy or emotion to share with that person. Every circumstance is different, just like each "vibe" is different on a date.
Use this thread and video topic to think about what works for you, but always stay open to what feels right in the moment with each person you meet in each situation!
Thanks girls for adding to this thread! It is so important for us all to share ideas and support because we all haven't tried everything! For example, I always wanted to try dry shampoo, but never got the chance. And Shannielee, don't get me wrong, I love to wear make up and wigs, hats or whatever I need to feel good or look good, But I am writing this post right now in pajamas, no make up and my hair in a ponytail! The best part is for us all to do what makes us feel comfortable. I love message boards like this because we can get tips and ideas that we might not have thought of before. I know I am so bad about reapplying sunscreen throughout the day. I feel like I start off the day good, but then I get so busy, or so tired that I forget. I need to get better with that.
I usually do my medication every sunday night like stacie said. I can see value in doing it once a month like the other girls have mentioned because I start to dread sunday nights. Although it would be a bigger job once a month, maybe it would be a bigger "pay off" to have the month off of filling the case.
Sometimes it is hard with me as medication doses etc change, but when I am on an even regular dosage this seems like it would help a lot! I am always open to try new things. It is so easy to get stuck in a routine when you have been sick many years with a chronic illness, but I am really trying to keep an open mind and to keep learning and growing. We can all learn from each other!
Any other tips about medication management? Do you guys wear medical alert bracelets? Do you keep a medication list in your wallet?
I love stories like yours that show that there are happy endings. Congrats on the twins! Keep us posted!
Let's face facts, sometimes there are bad dates and bad people out there with or without Lupus. I think sometimes we are so quick to blame our lupus for bad experiences in the romantic department. I do think if we started a bad date forum, it would be packed with men and women who have horror stories!
Also remember, like in the Lupus and Dating video on WebMD community TV we talk about how everyone comes with their own baggage in relationships. You might be coming into a relationship with lupus, but who knows what the other person is bringing to the table? It could be another illness, debt, family secrets... who knows! relationshsips are hard all on their own, with or without lupus!
The most important thing about dating and lupus is to have fun! If your not having fun, then why date!
I have a similar story of highs and lows. I was diagnosed as a teenager and was so sick that I had to leave my dream of being a dancer and going to school at the high school of performing arts. Then in college was in a remission, carried a full course load, had boyfriends, joined a sorority and even was a homecoming queen finalist! I started my career and had a great job, but soon enough lupus reared its ugly head, I had to leave work to rest and get better. I have been on both cellcept and even cytoxin. Do whatever you need to do to get healthy. Your health is the most important thing! Of course this isn't the life that you imagined for your 24 year old self, but who knows when the next remission or "good time" will be... it can be right around the corner... but you need to be healthy enough to get there! Maybe 25 will be your best year yet! you never know.
There is light at the end of the tunnel... sometimes you just need a few lupus friends like us to hold a few flashlights until you get there!
I LOVE your spirit! I actually never thought of looking at make up tip videos on youtube. What a great idea that anyone can do from the comfort of their own home, and best of all it is free!
I totally agree about experimenting with new and different products. That's why i love sample sizes so much- because you can try something out without having to spend the money, or have huge sizes of things lying around that you may not use!