Hi everybody. I am new to the group, still trying to figure out everything. I just wanted to introduce myself and give a little background. My name is Lacey, I am 25 years old and from Pennsylvania. I was diagnosed with Lupus and Hypothyroidism in January 2015. I've done a lot of reading online, and stumbled upon this support group. Since I don't get much support at home, I saw this as a good opportunity to meet some people with the same problem, learn more about my disease, and make some new friends.
Welcome Lacey!
This is a great group to get support and info. I'm 25 and live in New Jersey. I hope you are doing and feeling relatively well. I have found that everyone I have interacted with on here are VERY understanding and helpful, which is great when loved ones at home just don't seem to really understand what we're going through everyday.
Hello Lacy, Welcome!!!
I too was diagnosed w/ Systemic Lupus; Fibromyalgia; Rheumatoid Arthritis, & Chronic Fatigue in January of this year! I also have have no support @ home! My husband just doesn’t get it! I am 49 yrs old, married 30+ yrs. I have one Son who is 24 yrs old & lives in So. FL.
I live in North Myrtle Beach, SC. We moved here last May from Western NC & thats when I started losing my hair & I am currently bald, my hair falling out is what led to my diagnosis 8 months later!
I am new to this site myself & I have found it to be a wonderful site!
Where in PA are you u? My best friend lives in Shamokin, PA!
If I can be of any help, just let me know!
What was that “spoon theory” to explain lupus or RA to family n friends. Very helpful.
Hey Lacey, welcome to the community!! You definitely stumbled upon a great support group-- everyone here is amazing, relatable, knowledgable and has gone through unique experiences themselves. So welcome!
This is a good place to start. .get info and advice. .to learn. .and to feel the support. Welcome.
Thank you everybody! I am excited to have found such welcoming people. I have showed my boyfriend the spoon theory, he does try to understand. But I still live with my dad, and he’s the one who doesn’t get it, but he is willing to come with me to my next rheumatologist appointment in June. So hopefully the doctor can get through to him.
Hi Lacey, glad you found this group. Support is so necessary and you aren't alone in not having much for support.
A lot of us experience that. Hope you can find what you need here!
Hi Lacey, welcome to the group. I'm 52, that's almost the same as 25, right? LOL Anyway, I was diagnosed with Connective Tissue Disease a few years ago right after my 17 year old daughter was diagnosed with Lupus. I also have a daughter, age 28, with MS. I also have Trigeminal Neuralgia. I'm just south of you in Maryland.
You have stumbled onto a great group and I'm glad you are here. You will be surprised at how much you will learn and at how much support you will be able to offer to the other members of the group.
If I understand correctly, the spoon theory has to do with trying to accept how much energy or "spoons" a person has each and every day. If you want to do something, like go to the store, it might cost you two or three "spoons", if you only have five, that leaves three or possibly two left. It's about pacing yourself and accepting that if you use up all your "spoons" in a day, it's time to rest. If you are always trying to use up all your "spoons", plus more, you will always be depleted. My daughter with MS explained it to me and with my memory, that's the best I can do. Please correct me if I have it wrong.
Again Lacey, welcome to the group!
Cathy in MD
Hi Tracey,
I read your post and see that you started losing your hair and are now bald. Was this a slow process? I ask because I have area's on my scalp that are scaly red patches and now I have found that I have bald patches. My hairdresser took pictures that I had planned to show my Rheumy. When I tried to show my Rheumy, she told me to go to a dermatologist.
Thanks,
Cathy In MD
Tracey Robinson said:
Hello Lacy, Welcome!!!
I too was diagnosed w/ Systemic Lupus; Fibromyalgia; Rheumatoid Arthritis, & Chronic Fatigue in January of this year! I also have have no support @ home! My husband just doesn't get it! I am 49 yrs old, married 30+ yrs. I have one Son who is 24 yrs old & lives in So. FL.
I live in North Myrtle Beach, SC. We moved here last May from Western NC & thats when I started losing my hair & I am currently bald, my hair falling out is what led to my diagnosis 8 months later!
I am new to this site myself & I have found it to be a wonderful site!
Where in PA are you u? My best friend lives in Shamokin, PA!
If I can be of any help, just let me know!
Debbie and Cathy In MD,
I just recently found out about the spoon theory a few weeks ago. It was the greatest explanation I have heard about what it's like living with lupus. Actually I may just post that on my facebook page today for Lupus Awareness Month. Here is the link for The Spoon Theory. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
Natasha.
Thank you so much! I am so glad to read the full story, actually I never even knew there was a story behind it. I had the right idea in general but this is perfect and greatly appreciated. It also explains how I feel so often, which I admit, I have trouble admitting to myself. Of course, then I end up so exhausted that I sleep for 2 to 3 days.
I think this might be helpful to everyone in the group, perhaps as a new discussion or somewhere else. Everyone should read this.
Thanks again,
Cathy
Thanks for the spoon info. I couldn’t remember it all buta fw months ago I introduced a coupolev of friends to it to explain how I feel.
You’re welcome Cathy and Debbie. A few of my friends had a better understanding of how much of an effort daily life is for me now Compared to before. I’m actually in the middle of a flare right now so it helped me also explain to them that lets say instead of starting the day with 12 spoons I’m only starting off with only 8 or so, maybe less.
Hi Lacey. I'm also new to the group and saw it as an opportunity to make some new friends. But I haven't had much luck with that. I was diagnosed with Lupus in 2010. I'm tired all the time and have a lot of pain in my legs and my joints. I'm from South Africa and are on Methotrexate. I haven't seen a specialist since I was diagnosed but I guess I need to go back to one. The problem is I've moved cities and can't see my specialist any more so I have to look for a new one and just don't have the strength for that. Hope to hear from you soon.
Welcome. I know you will find support and friendship here at this site. I hope you are well. God Bless Julie
Welcome to the group, Lacey. What kind of symptoms do you have?
Hi, Lacey, I'm pretty new here myself but I have found a lot of encouragement and he'll here. I was more fortunate than you, I found this forum a couple weeks after being diagnosed. It has been great finding out that I wasn't going crazy, that what I was going through was real.
Hi Lacey and welcome! The group of people on this site are amazing people that are always willing to share and support each other. We all have a story and it really helps to know you are not alone. I am 48 and I live in Colorado. Feels like I have been fighting this fight forever but being a part of this site makes it a bit easier.
On a side note for Cathy and Tracey Robinson, I have found that taking 5000 mcg of Biotin really helps with the hair loss. My hairdresser recommended it.