Hello I am so glad to meet you
Hello, you have no idea how glad I am to meet people who may go through the same things I do. I am 36 years old and was diagnosed with SLE about 5 years ago, I had been ill for 3 years prior to diagnosis. I take plaquinal, imuran and a host of other medications from anti-infammatories to anti-anxieties. When I was first diagnosed I was happy because someone could finally tell me what was wrong. Then I slowly began to realize what the words "managed treatment" meant, and knew that this disease would plague me forever. I used to be an active, happy person. I spent 4 years in the Navy in intelligence, I went hiking, I am a correctional officer. Now I am afraid I have almost run out of hope. I live for my daughter and as long as her needs are met I do nothing else. The arthritis in my knees, ankles, spine, and wrists limits everything, and to be honest when I have a good day I am afraid to do anything that might bring the pain back. Except for my doctor I have had no communication with anyone who really knows anything about lupus. I am hoping maybe you guys can let me know I am not alone. My support system is non-existant, this is my last cry for help.
Hi Xani's Mom,
I'm Rob, and I was diagnosed with SLE in 2004, I am 42 years old. Two years ago, I came here with a last cry for help. I had no support system at the time either. I now have literally dozens of friends here I can call on if I need to talk about living with SLE, or if I just want to vent, or just visit for the fun of it. The support and advice I found here allowed me to build a support system of people in my daily life who don't necessarily have SLE, but who do their best to understand and be supportive.
I was also in the military, I was a tank crewman for 6 years in the Army. After that I was in the smallarms industry for many years, and had a thriving business that I had to sell because of the limitations SLE had imposed upon me. I've been on full disability since late 2004. I used to hike alot too, did the Grand Canyon twice in one year. Those days are gone, but I have found new activities that are just as challenging and are within my limitations. My fiancee left me for someone "healthy" not long after the diagnosis, but today, I have a wonderful lady in my life who accepts me as I am, and is incredibly supportive.
My message for you is simple. You are definitley not alone, and despite how bad things can become with this disease, we can still live a fulfilling and meaningful life. Learning to live with and manage SLE is a long road with many challenges that can seem insurmountable, but there are many ways we can adapt and adjust. You've been fighting this disease for many years, and I know hope can seem to be an impossibility, but it's not. We all have some bad days ahead of us, but we also have a whole bunch of good ones as well. I strive to live for the good days, and endure the bad ones any way I can.
As you well know, the only people who can truly understand Lupus, are others with Lupus. We have an average of over 100 active posting members here at any one time, so you have come to the right place.
Welcome to WHL!
Last edited by rob; 10-22-2010 at 02:29 PM.
The Following User Says Thank You to rob For This Useful Post:
Hi xani's mom,
I'm Terri and 42yrs old and i was diagnosed last year but was actually born with SLE, i've had symtoms after symtoms from 14yrs old onwards but started feeling's things from 5yrs off age and at the moment it's been blood tests after blood tests and like yourself, i have terrible pain in my joint's plus the colds starting to react to my skin.
I have my loving husbands support but i needed other's in the same boat and situation as myself and the members of the WHL have been terrific, so your definitley on the right site for support and help.
Takecare Terri xx
The cold affects me also, but unfortunately the heat is worse. I actually look forward to colder weather because for me putting on more clothes or bundling up helps in the winter, but in the summer there is no escape except constant a/c. I am sorry the cold is bothering you, except my face I havn't had terrible problems with my skin but when I do its unbearable. I wish I knew something that would help you. Thank you for welcoming me--Heather
Originally Posted by xani's mom
The cold is worse for me and i can't go out in heat unless i'm using a 50 block and after 10mins you mays well have pulled me out the oven.
Now where you look foward to adding more clothes, in the summer in doors i manage to wear T-shirts that keep me warm with my body but don't drive me mad with over heating and outside i'm stuck in the shade. Oh heather i just keep going mate, i'm using cream for me face just twice a week and steroid cream for my hands as they've started developing raw cuts in the last two days.
I realy hope you benefit from the site and Rob's a good bloke and full of info.lol
Hugs Terri xxx
Last edited by Peridot_Gem; 10-22-2010 at 06:57 PM.
Welcome to WHL! You and I have a lot in common. I'm originally from Illinois - a small town called Hartford, right across the river from St. Louis, Mo. I'm a military wife and my hubby is currently studying at The Naval Postgraduate School, even though he's an AF officer. He's working on a PHD in computer security, and has worked in military intelligence for many years. I'm probably a bit older than you are - we have five grown children and three grandsons.
Like Terri, I think that I've had symptoms of autoimmune issues since I was a teen, but it was just diagnosed in the last four years. Mine is called Mixed Connective Tissue Disease, so I have symptoms of Lupus, Sjogren's, RA, Psoriasis and Polymyositis, with Spasmodic Dysphonia and Meniere's thrown in for more fun.
I know how you feel with having to make peace with dealing with this for the rest of your life. I hate taking meds, but I've resigned myself to it if it will slow down the progression of this disease. I'm a fairly positive person, and I still stay active in lots of things. I hobble along on my cane or rollator, or my hubby pushes me in my wheelchair if we're traveling. I'm very outspoken about what is wrong with me, so most of my friends understand and they slow down for me or help me along.
You've come to the right place to find people who understand you. I hope you stay and become a friend.
Thank you for your response, I appreciate any advice I can get or even just recognition at this point really. I have in the last couple of years stopped doing anything with my friends. I feel as though if I were to start to flare up or swell while we are doing anything they will not understand. I hate to feel as though I am always whining especially when I used to be such a strong person physically as well as emotionally. I also can not drink at all, I am sure that one drink would not hurt me but I try not injest anything that could make things any worse. Besides, I don't have the tolerance to be around drunk people. About three years ago I had gotten to the point that I could not walk for days at a time, for my daughters sake we moved in with my parents. They have helped a lot with helping me get around and things, but they don't really understand my disease. They seem to think I should be able to "man up" and walk it off. I know it is hard for parents to deal with things they can't fix when it comes to their children, but it doesn't help much on the supportive side. I am walking much better these days though, occasoinally I do something that my dad thinks I should be able to do just out of stubborness. Like carry something I shouldn't, walk to far, or some obscure outdoor chore-then I pay for it for days. I guess my point is how do you be outspoken about your illnesses without the people around you thinking you are always whining, or it can't possibly be as bad as she thinks it is?
Can you give me some advice on how to use this site. I am not completely computer illiterate but close. This is the first time I have been on a forum/chat site, and I am not sure what I am supposed to do. I thought it would be like a back and forth talk kind of thing.
In answer to your question - I guess it helps that we've only lived here for a year and my group of friends have always seen me using a cane. Jeff is in school, so I quickly joined the Officer's Spouse's Club. I'm the oldest member, and the only grandma in the group. Most of the ladies are the ages of my daughters. I suppose that with age, comes a certain amount of respect.
I was at a gourmet club dinner the other night. The new Base Commander's wife very respectfully asked me if I had had a stroke, since I had been joking around about being "the crippled old lady of the group". I took it as a teaching moment, and explained Mixed Connective Tissue Disease to her and the other girls who were listening. Anne thought that it sounded lots like her friend with MS, and I assured her that it was much like it, and was also an autoimmune disease. All of those young ladies are always very quick to help me, and I'm enjoying being part of the group - I was elected 2nd Vice President this year!
I was the same way with my students when I was teaching. I started out each year explaining to them why I sometimes fell, or my voice would be strange. When I fell in front of the classroom, the kids would help me up, turn me back to the whiteboard and we would continue our Latin lesson. I used my cane or my rollator in the hall as protection. We had over 3000 teenagers in that school! You would be amazed at how protective my students were of me.
I was very proud of one of them a few months ago. She e-mailed me that she was starting as a pre-med cadet at the Air Force Academy. She wanted the names of each of the AI diseases that I have so that she could begin researching them. She told me that she wants to be the medical researcher who finds a cure for them, in honor of me! It brings tears to my eyes to write about her!
So, my experience has been that after I learned a lot about my issues, I would turn around and educate everyone around me. I get out there and do what I want to do and I sometimes overdo it, like you. However, everyone around me just seems to be proud of me for trying.
On drinking - I live in the middle of the California Wine Country - so I do drink! My doc says that it is ok as long as it is not the day of or the day after my MTX injection - Hooray! Being a part of the Officer's Wive's Club - it's a social thing for me. I have regular liver function tests because of the meds, and the doc is happy, so I'm happy. You just have to find the balance that works for you.
On using this site - Look through all of the threads that interest you and reply to anything that you like or have questions about. That will put the thread into the "What's New" category and others will come along to read it and post. That way, we can carry on "a conversation" even though we live in different time zones and aren't online at the same time. Just be patient - somebody usually comes along to answer posts eventually.
I hope that my rambling helps!
I'd be happy to help. As far as back and forth talk, you can do that in the Chatbox on the main forum page. You can talk to others in real-time there. The best way to use this feature is to look at the bottom of the main forum page where it says Currently Active Users. That will tell you who is actually online. You can type out a message to anyone on the active list. However, they would need to be actually looking at the chatroom to reply and talk. You can also take a look at the Chatbox from time to time and if you see an ongoing conversation, you can join that conversation. You can also ask another member if they would like to chat by leaving them a visitor message on their profile page. If they are online, they will see that someone left a message as it shows up in the notifications area at the top right of the page. I sounds complicated, but it's easy once you've done it a couple of times.
Originally Posted by xani's mom
Do you have any other questions? If so, just let me know.