View Full Version : I'm new to the site and one of the 10%
07-22-2009, 11:50 AM
Hello my name is Kyle and I'm new to this site. A lady who is a customer of the corporation I work for told me about this website. I'm one of th 10 percent males who has Lupus. I was diagnosed almost 4 years ago. I have my good days and my bad days. Depression is the main thing for me because my joints always hurt. I haven't been as good as I would like about getting to the doctor, but I'm going to work on getting back and going. The mornings for me are the worse. I lay in bed for almost 30 minutes and just don't want to get out. I live in Oklahoma and I'm ready to make some new online friends who understand what I'm going through and who I can talk to.
Kyle in OKC
07-22-2009, 12:04 PM
Hey glad you are getting out there and with new commitment to your health. I think there are some improvments in the last four years and hopefully you can get a good treatment plan that will work for you. You shouldn't have to feel bad all the time.
So when is your next appointment with your rumie? ;)
07-22-2009, 01:16 PM
Many, many friends here for you...and a several of them are guys too...
I am Oluwa...welcome hugs..
The important thing about laying in bed is that you are getting up! The longer we lay, actually creates more stiffness and pain...
Pain is very mind bending...I know the depression, the blahs, the blues from it. How do you try to keep it at bay? Me? I focus on a small project, come here...play games..swim...paint a little...I have rooms now half done...
But do keeping moving in some form..it will help even if we hurt. Not run a marthon or the like.. but walk, stretch, swim...
Do you take anything, like pills before going to bed? Can you roll over or do you just stay in one spot because it hurts to move while you sleep?
BTW, how is your sleep? Sleeping well is important...lack of it creates our pain to hit levels of 10 and above...
Roam about, read more threads, find the guys...play a game..if you can...I can handle one finger mouse games only...check out everyone's pictures on their page or the main community page. I have many albums on my page...click my name...
See ya about..again welcome.
Keep looking for your wellness, be well.
07-22-2009, 03:24 PM
Yes you are gonna make allot of friends here.We have a few other male friends here also with lupus.So dont worry that we are all female.
Yes depression can be a terrible thing,so make sure you wake up n get up.Like Oluwa said...stiffness = pain. Keep talking,posting here,we are all here and will support you.
07-22-2009, 03:42 PM
Welcome to the site and sorry to hear you have Lupus. You have come to the right place to find love, understanding, support!!! Everyone on here understands what you are going through and how you feel because we have Lupus as well. It's hard feeling depressed and feeling the aches and pains from joint pains. I underwent that as well for a long time. I actually saw a therapist for my depression as I was angry and depressed and talking to family and friends just wasn't enough to help me get/work through it. I needed someone to just listen while I expressed how Pissed off I was. Needless to say I feel I am better and that same morning "I wonder if I can move" pain has gone away for the most part.
Again...write what you feel, have questions about, angry, depressed etc. and I can honestly say you will receive support and understanding along with a host of cyber friends who will check on you always...this has been my experience. I love this site and it has helped me through the toughest times I have ever experienced in my life!!!
I'm Rob, another member of the "ten percent" club. I was diagnosed with 5ystemic Lupus 5 1/2 years ago. Like you, I have terrible joint pain and depression. I get brain fog that's really frustrating, and the feeling I get in the morning is like I have a lead blanket over me.
We have a dozen or so men who are active members here. I think you'll find that this a really active site, with practically no post of question going very long without a response. If you have any questions about how the various functions of the site work, please don't hesitate to ask. Make yourself at home, and welcome to the group!
07-22-2009, 08:06 PM
Welcome you've come to the right place. Im glad you found us. Hugs!
07-22-2009, 08:28 PM
I'm glad she told you about this site. You will find that, if not physically, then spiritually & emotionally you will feel better after just a short time on here. Check out all the rooms on here. There is so much good info, friendship and support to be found. Plus the fun games that Oluwa mentioned.
07-23-2009, 02:33 PM
As you can see, you have definitely come to the right place to make friends and to meet people who understand what you are going through.
Please know that you are not alone. Most of us have dealt with the depression (actually, we still do deal with it) due to the constant aches, pains, and lifestyle changes we've endured due to this disease. We are here to help you to deal with those feelings as they are just as real and just as valid as is the disease itself.
I am so familiar with the inability to jump out of bed like I was once able to do. It takes some time for me to get the strength to get out of bed and then to get my body to cooperate without excessive pain! It does get to be disheartening, but I always remind myself that 'I am, at least, able to get out of my bed. There is someone, somewhere this morning who can't even do that!'
We are here to help you deal with this disease and to assist you in making appropriate lifestyle changes so that you can better manage the disease. Also, we want you to learn everything that you can about Lupus, its treatments, medications, symptoms, and how it affects you. In that way, you will be better able to make appropriate medical choices that will enhance your ability to live with this disease.
Welcome to our family and I am so glad that your friend pointed you our way!
Peace and Blessings
07-26-2009, 09:00 PM
as you can see, your co-worker was correct about this forum. there are so many members who are always accepting and compassionate. If you browse around, you will see just how close we are.
i am so glad that you have made the committment to make your health a priority. There are different medications and treatments that really help a lot of us, hopefully your dr. will get you started on some that give you relief.
We are here to answer and questions, or the help you work through sorting out the sometimes confusing lab results, and/or drs. visits.
Depression is understandble, the never-ending pain justs keeps wearing us down until the mind gets weary....we will always be here to help if you need us.
welcome again...so happy you found us.