View Full Version : SLE patient and so sad about it

09-20-2005, 11:12 PM
Hello eveyrone,
I have been diagnosed with SLE for about 1 yr+ now and while I have run into many difficulties, pain, failed medicines, etc. I have always held my head high. Today... I'm just plain o' SAD. I don't know... It seems like a neverending thing. Never knowing if today will be a good day or not. I'm not depressed, but needing to cry and be sad about it all. Does anyone else feel like this? What do you do to stay positive, energetic, fit? I have gained about 35 lbs due to Prednisone and I'm just feeling crappy here all by myself.

09-21-2005, 05:04 AM
I too am looking for a way out of the sadness. Never being able to plan much because of the bad days, not sure how far I can walk anywhere, and the weight gain...now I have the discoid rash that isn't responding yet to meds. I feel like I have the creepin' crud. I am so embarrassed. But I try to laugh a lot (on the outside) and know that there are so many people who have it so much worse. I will be anxious to hear anyone's suggestions as well. Thanks.

09-21-2005, 02:30 PM
Thanks for responding. I know it is hard. I deal with it all the time, but yesterday I was just really sad about it all. Sometimes you just have to let it all out and allow yourself to be mad and/or sad. I fight this urge less and less as time goes by, but that doesn't mean it is easier. Stay strong and let's see if anyone else have any good advice on how to stay positive and what activities they do that doesn't cause too much pain. One thing I like to do is swim. Swimming helps me feel active and it doesn't hurt my bones, muscles etc. as much as any other exercise I have tried.

Good luck to you. Hang in there!

09-22-2005, 01:51 PM
Hi All;
Living with Lupus is like being on an Emotional Rollercoaster. We all suffer from many emotions due to our illness, such as Anger and Depression:
Taking medication or going through intensive drug therapy can be upsetting. The disease prevents us from participating in certain activities and from doing some of the things that we used to do. We, then, miss out on being with our friends and our social life suffers. Lupus also causes noticeable changes in our appearance which can be embarrassing. It is frustrating to constantly be reminded that you have an illness. The feeling that you did something wrong to have to suffer so much can naturally lead to negative thoughts and anger as well.

It is natural for anyone who discovers that they have a disease to be upset. Depression is often an emotion that we experience. It is hard to try to focus on staying positive and to take care of ourself. But, it is very important that we do because do so can greatly decrease the amount of medication you will have to take, and therefore reduce the side effects.
I try to stay as active as I can by doing some kind of exercise on a daily basis. Also, I have found that by doing this, I develop a whole new social outlet filled with people who are doing pretty much the same thing that I am for reasons that are pretty much the same. So, we do not judge one another - we support each other and always feel better about ourselves afterwards.
Nobody likes to be sick. Constantly taking medicine, visiting different doctors, having blood tests, and listening to advice and reminders from family and friends can be frustrating. Itís a continual reminder that you have a disease. Keep in mind that if you work really hard, your illness can go into remission. You can go longer amounts of time without symptoms. I know it is a real challenge; but do try to stay positive and take care of yourself; you can control lupus instead of letting it affect how you think.

What can you do? TALK IT OUT like you've done here. It is very unhealthy, and unwise, to sustain long periods of depression and unhappiness. Consider talking to a counselor, therapist or sitting in on support groups, like thius one, be very useful.

I wish you the best

09-23-2005, 03:08 PM
hi fendiDK and spld1 and welcome to this great site. A lot of us here can relate to the sadness you are feeling. I completely relate to how upsetting it is to never know if you are going to have a good day (I have had to revise my definition of a what a good day is). It took me over a year since I had gotten sick to join any forums and I'm glad I did. I think I was in denial for a while, but then reality set in and I was filled with intense grief. It hit me really hard how much my life had changed and having to give up so many things I loved doing. Posting on lupus forums has helped me a lot. Just knowing that there are others out there who can truly relate to waht you are going through is such a relief. I am glad both of you are here :)

10-19-2005, 10:45 AM
I know exactly how you feel. I was diagnosed with SLE 9-14-04 after being sick for 2 yrs prior and when I saw my PC, he said he had some good news and some bad news. Good news-he found out what the problem was; bad news- it was lupus and on top of that, I was the 2nd worse case he had ever seen. The first was a young man he was in med school with who died, now my case. The results of the ana test that was done was 1:10250 which he said he had never even heard of a reading that was that high. There is kidney involvement, lung involvement and sun sensitivity. I take a lot of meds but am in the process of cutting down of some of them.
At the time of diagnosis, I started on prednisone 60mgs which turned out to be to high of a dose because in 12 days I went from 131 lbs to over 300 lbs and because it was thought that I was allergic to sulfa meds I had to come up with a home remedy for losing the fluid (hot lemon water-no sugar) and in 1 week of drinking 2 cups daily I was back down to 160 lbs. I am on 2000mg CellCept, Benicar 40mg, Cardizem 360mg, prednisone 10mg, lopressor 200mg everyday. The doctors are cutting out the prednisone because its causing other problems.
I have had my days when I just cried just because, I wasn't feeling sorry for myself but I felt that if I didn't, I would go crazy. I talked to my mom but its hard to explain to someone who does not have such a horrible disease just how you feel. People do not understand your tears, your silence, your agitation of just those time when you just want to be all by your self. I have been down that road and now I am just thankful everyday to just wake up and am able to take care of myself. I have a 10y/o son who has seen it from the beginning up to now even during the 5-6 blood transfusions and the stays in the hospital when it didn't look like I was coming home he was there and I made sure he understood what mommy was going through.
Don't let people make you feel like it's wrong to cry. Holding in the tears is stressful all by itself. Crying doesn't mean youre depressed, its sometimes just a necessary outlet.
Keep smiling and just take it in stride!!! :lol:

12-09-2005, 10:03 PM
I too am new to this board, and I am so happy I found it!!! I understand the problems you are all having with the sad/angry/ect...I was diagnosed 9 years ago. I have just recently been having issues with the anger and sadness!!! Before that I felt I had to be the strong one for everyone around me. No one can "see" what is wrong with me because I mostly look normal and healthy, so they have a hard time understanding. Otherwise, when people would ask how I was feeling, I would say fine...no one wants you to lie to them, but then they don't want to hear the truth.
After the first anniversary of a near death experiance which resulted in open heart surgery...I finally broke down. I also keep adding to my list of medical complications!!!
I want to tell you that it all will get easier, but I feel that we are put in this situation to learn something about ourselves. I have also found it wonderful to talk to others with similar problems to mine!!!
I can tell everyone about a bad day, and they can relate...also...the best advice I was ever given was...if you feel like crying, cry, if you feel like screaming, scream, but don't forget to dance every once in awhile to balance it all out!!!

Bless you, and I hope that you have more days were you want to dance!!!