View Full Version : First post, been reading awhile now

04-18-2013, 03:39 PM
Hello, I was diagnosed with lupus last September but probably had it for at least 11 years prior, my first high ANA was in 2001 and I also started with arthritis back then. Over the years the symptoms have increased including a stroke in June 2008 and, starting last summer, the dreaded skin rash from being in the sun though it's only on my arms and chest, not my face. I live in Southern California and have always been a beach girl, love the pool and swimming, and lived in Florida for 18 years where we spent every chance we could out in the boat. Now the sun is my enemy.

Now ... life pretty much sucks but I really can't complain to anyone in my life because I don't look much different. I broke my foot when I had the stroke and go SO MUCH attention from having a cast on my leg and that never even hurt one bit! I suffer with constant headaches, pains in every inch of my body, but because I look normal, everyone in my family acts as if I am only seeking attention (which is laughable because they shun me, they don't give me any attention), trying to get out of work, or some other imagined incentive. I have learned to live with the aloneness but there are days, like today, when I just can't help but cry.

I think the worst thing is when I read here and although many of you suffer with even worse issues than me, my husband did not stay by my side. There were many mornings that he physically picked me up and carried me into a hot shower where I sat huddled, allowing the hot water to pour down the top of my head; we spent long hours in the ER in the middle of the night; there were seemingly endless and expensive doctor visits where they shook their heads and could not give me an answer until finally, my husband started seeing another woman and we divorced. That was worse pain than the lupus could ever cause me and yet indirectly it was because of the lupus.

About that time my only child (grown) moved back to California to be near the rest of the family, so I decided it was pointless for me to stay in Florida alone, so I moved here too. It was here that I finally got my diagnosis. I've had supermarket clerks and complete strangers in doctor's waiting rooms show such compassion and kindness if lupus comes into the conversation that it's all I can do not to burst into tears at why my own family does not show any at all but rather they are judgement and tell me I just need to "take and aspirin" or "take a walk and stop thinking about yourself" or "I get sick too but I don't let it keep me down." I am not one to sit in the corner and complain about how sick I am; I do just the opposite because I don't want people to feel sorry for me but it seems that none of them even care enough to type "lupus" into Google to find out what I'm coping with here. It just makes me sad that I went from a happy woman and homeowner who worked hard and had a garden and went camping and boating with the love of my life, to a pathetic woman who lives alone in a dark little apartment and really has no one who understands. Or apparently cares enough to understand.

Thanks for letting me vent. I figure that if anyone would understand, it would be you folks.

04-19-2013, 07:33 AM
hi donnalynn, and welcome. unfortunately my enter key does not work when I am on this site.. so please excuse my lines running together. I have a couple of things that you might like to read, I will place links below. yes I do understand your pain. I was undiagnosed for about 35 years. and my wife has asked me to leave after 12 years of marriage, plus living together for 6 years before that. http://forum.wehavelupus.com/entry.php?624-the-REAL-cost-of-Lupus http://forum.wehavelupus.com/showthread.php?11692-The-Open-Letter-To-Those-Without-CFS-Fibro-… http://forum.wehavelupus.com/showthread.php?12099-The-spoon-theory

04-19-2013, 10:44 AM
Thank you so much, Steve. Just knowing there are other souls out there coping with similar issues helps the aloneness. Yesterday was a particularly rough day for me so your timing is wonderful. I'm sorry to hear about your wife ... I was married for 14 years. I ask myself, if the tables were turned would I have stayed and cared for him? I like to think so, yet I don't even like being with me, how can I expect any other person to want to be with me? I'm not the woman he married, not by a long shot.

The one person who has been super supportive is my friend who has diabetes with diabetic neuropathy so she "gets it" and is the only person who has even taken the time to ask what my symptoms are, or what a day in my life is like. She's very careful about asking what I can eat and if I think I can go somewhere with her, and we often take separate cars so she can stay out longer then me. She moved to another state a couple weeks ago so that may be what initiated my latest bout of pity-party time.

Reading the "Open Letter" makes me realize I've been too much of a soft-sell to my family, not being truthful about how sick I really am and how bad I really hurt. Usually when I start to express it, I get interrupted with a know-it-all reply. I'm going to copy and paste that letter to my family and let the chips fall where they may. They already seem to think I'm a malingerer so what do I have to lose? Thanks again and I am happy to be a new member of this forum.

04-19-2013, 01:00 PM
Hi Donnalynn,

First of all, BIG HUG for you.
After the hug, welcome to WHL, I am glad that you have found us.
I am so very sorry, that you have such a non caring family. But now you have us, your cyber family and all of us know, how you feel and what you are going through on a daily basis.
You will always have our support and an open ear. We are here for each other.
It is hard, for non lupies to understand, what we go through, because they don't know, what it's like to have pain in your whole body, feel so fatigued, that you can barely stand up, the dizzyness, nausea ect. They just don't think, that one person can have all these problems, all at once.
Even my husband, who is very loving, understanding and very helpful. Yesterday when he came home from work, he saw, that I was feeling pretty bad and said that he wishes, that he could take the pain from me, but he also said, " what happened, honey, you felt good this morning"! Well sweetie, that is what Lupus does, it attack's when you least expect it.
I go from feeling good, to feeling so bad, that I can't move or even speak, all within a minute.
I hope, that you will find more understanding from your family, but like I said, we are here for you.


04-19-2013, 04:05 PM
Thank you Debbie, that feels so wonderful, I have been going through a bad time physically the past 3 days and that spirals down the emotions too. I do have a great little beagle who is my best therapist but sometimes it's a massive ordeal just to get him fed and walked, but good for me to get up and out. Thanks for making me feel welcome here.

04-19-2013, 04:08 PM
Thank you Steve, I replied to you earlier but it said it had to be moderated, maybe I hit the wrong button ... those are great links and I especially like the letter to people who don't have an invisible illness. I may email it to family members but they would most likely ignore it anyhow. It sure does feel nice to have welcoming people here, thanks.

04-20-2013, 07:35 AM
Thank you Steve, I replied to you earlier but it said it had to be moderated, maybe I hit the wrong button ... . I have fixed the glitch, and your post is there for all to see. I offer those links because I know how they have helped both me and many others. as the site gets bigger, it becomes harder to remember where all the good posts are. that is why we try to make some of them "stickies". stickies are at the top of each section, they contain information that we believe to be very beneficial........ when you want some interesting reading .. go and read some stickies. they will help you to understand what you are dealing with, from the view point of others who also suffer.