View Full Version : I'm new and looking for cyber support
03-24-2007, 07:47 AM
Hi. I just found out I had lupus in December, and I'm sure my story is the same as yours....a years worth of misdiagnosis until someone thought to do the ana test.
I live in Paris, where the healthcare is pretty much free (thank god). But the idea of a support group or online community is non existant.
I also have no family, and superficial friends who don't think I'm sick because "I look fine." (I don't look fine btw, I have hardly any eyelashes, giant cankles, horrible acne....).
This disease is so hard.
My energy is gone, so I feel like my life is gone. And every tiny thing (and there are a million tiny things) sends me running to the rhumatologist/dermatoligist like a hypochondriac.
My house is filthy, my business is flailing, I'm constantly exahusted (although the tendon/joint pain is greatly helped by the non-steriod anti inflams), my dog doesn't get his daily walks. I have pleurosy, so I can't wind myself and I'm even afraid to laugh really hard.
I'm a wreck. Physically and mentally.
And I'm all alone.
A word of encouragement, an idea for some relief, a suggestion to help the mental burden, an introduction to a wealthy husband (kidding, er, sort of).
I'm reaching out and I'll be grateful for any advice or comments.
03-24-2007, 08:22 AM
Welcome to the Forum! :D I'm really glad that you found us! :D
Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you! :D
I'm sorry that you are going through such a hard time :cry:, but have you ever thought about possibly speaking to a Psychologist, just to talk to someone and get some support? It's amazing how helpful it can actually be! Many people with chronic illnesses do this because everything is just so stressful and other people just never seem to understand...
I hope that this helps!
03-24-2007, 08:47 PM
I am the wife of a Lupus sufferer and like you it took a long time to diagnose, as the Dr.s just didn't want to know when it was suggested that this may be the problem, as to why Kevin had been sick for so long and was not improving.
Finally a good long look was taken and it was solved. As he has had cancer and also has a bad back injury, that does keep him from working and as he wears a spinal stimulator , which needs to be put in place daily with special sticking plaster, I am needed at home most of the time. While he was so ill for around 2yrs, he hardly spoke and to give him something to keep his mind occupied, I let him have carte blanche with the TV , so I too know loneliness, so I know where you are coming from.
The good news is, since he was placed on Prenisone, which I might add is being slowly reduced each week, he is now so much better and is now talking and doing bits and pieces around the place.
Dont be afraid to try the medications that are on offer, as thier benefits can outweigh any negatives that you may have heard about them.
I am sure that you will find the companionship that you need on here and also someone , who knows what you are going through and can commiserate.
03-26-2007, 08:50 AM
Hello Gentry :-)
I know how lonely this disease can be, especially when you are pretty much surrounded by people who just don't seen to understand or who don't want to understand. The whole, "But You Don't Look Sick" myth has plagued us for much too long. Here is a website that many of us have suggested for our friends and family, so that they can have a better understanding of what we are going through. It is called "The Spoon Theory": www.butyoudontlooksick.com/spoons.htm
Also, the fatigue is one of the most misunderstood aspects of Lupus. People want to relate our fatigue with 'being tired'...it is worlds away from just being tired. I would WELCOME just being tired. Our fatigue is sometimes absolutely debilitating, we can't get up to go to the daggone bathroom, it is much too strenuous to brush out teeth and combing our hair....forget it!!! The fatigue is so unexplainable! I used to say that it felt like having the worst flu you've ever had in your life and having it 24 hours/ day...7 days/week with no hope of every getting over it. Then I'd ask, "Now, how would you like to live with that for the rest of your life?"
Anyway, you will never find anyone here who will not understand, who will dismiss your feelings or your symptoms. We are here to give you support, comfort, information, encouragement and to be here when you need us. We want you to know that you are not alone and that we do understand!
Welcome to our family!
Peace and Blessings
04-10-2007, 08:20 PM
I'm so sorry to hear you're having a rough time. I'm not sure there's much I can say but hang in there, things will get better. It sounds as though you're smack bang in the middle of a horrible flare. It will pass, and although your life will be changed forever, life is much easier once the flare has passed.
I hope you find many new friends on the forum. And I hope you find the answers you're looking for.
04-15-2007, 06:46 AM
I know how you feel. I was only diagnosed two weeks ago. The first week all I could do is cry....first for the pain I've been suffering for the last 8 months with no relief (and then the word from the doctor that if could take six weeks to six months for the meds to give me any relief and thats if they work at all for me) and then there was simply the concept that I had been dealt such a crappy hand in life...
This week emotionally I am feeling better. First I found this site with so many caring people who are suffering exactly like me and share how they deal with it and then I also took a minute to reflect. My life has been extremely blessed with health. Up until eight months ago, I've never had much of anything beyond flus and colds.
Right now, my sister in law has ovarian cancer...the clock is ticking for her and with chemo, radiation, and surgery...she's been through the mill and back and she really does not have much to look forward to. I compared my circumstance.....and decided I'm not so bad off. Yes, I'm in pain and praying I go into remission soon. Yes, we will probably go through some things in the future that aren't pleasant...but its not the big "C"! I also watched a show last night where a lady was paralized from the neck down...that would be awful and while it is hard for me to walk right now....I can walk! So, maybe if you take a look around you, it will also help you to deal with this...it has helped me. I now feel like I can cope and deal with this day by day.
You are in my prayers!
05-03-2007, 07:53 PM
I had to start having my kids help out, but then felt guilty because I am home all day. One thing we did to help the bathrooms was one of the automatic shower cleaners. Push a button and it helps keep it clean. I use bleach tablets in the toilets. The main thing I do is trying to do a small thing here and there. When the bathroom gets really bad, I clean the sinks one day, the toilet the next and it eventually looks clean. I have 3 kids so I have a lot of laundry. I do one or two loads every other day or wait until the weekend and have my husband carry it since my back hurts so bad. Most days I do nothing and figure if someone comes by, too bad, they just gotta understand I can't do it all anymore.
05-04-2007, 06:10 AM
You will not be alone here. Everyone is so supportive and encouraging and very fun to talk to. You can get a lot of helpful information on here as well. I hope your docs can get you on the right meds to help you feel better. Have you considered an antidepressant? I myself don't take one but I think sometimes I should. For right now I am just trying to use my mind to trick myself into thinking I am not depressed (if that makes and since). I feel like I will know when I need something more than just "mind power" to get through my day with a happy disposition.
Hang in there and please keep in touch so we know how you are doing.
05-04-2007, 06:29 AM
Hi Gentry, me again...
I was reading back over your post and noticed what you said about the insurance. That is so great that your health care is practically free. Take advantage of that to get the help you need. And you can go to a derm for your acne. Maybe you will get better results than I did. Mine told me that most of the meds I could take for the acne are going to cause a flare in the lupus rash (which I seem to have all the time anyway) and just sent me on my merry way. So I'm kinda stuck living with them both with no relief until I can get some help from a different derm. You are very lucky to have insurance. I don't have any. So I am not getting the help I need. It is a wonder I am not so depressed that I am going to go off the edge. I get the knots under my skin that are not so noticeable but are extremely painful.
Anyways, just do what you need to do, dermatologist, physcologist, rhuemy, whatever...but in the meantime you do have friends here...
05-04-2007, 01:13 PM
bon jour! so sorry your going thru it! but everyone is right,hang in there, it will get better. and my dear fellow mommy of a ladybug :lol: saysussie beat me to the spoon theory referral. i just emailed that to everyone i thought didnt 'get it' are i was tired of hearing 'but you dont look sick'. it really helped alot of people understand for me without me worrying about it.
welcome my dear gentry, be well and come back often! :wink: