Down in the dumps

I have been a positive person thru the 23 yr roller coaster of lupus. The last 2 years depression has gotten the better of me. 3 different anti depressants and a mitt full of other meds including prednisone. My Dr.'s are aware of my blu mood. I should get out, you need to be with people....blah blah blah. I just want to stay in bed and cry.

Lupus has changed my life. membranous nephritis, articular occlusion bilateral amputations, A hole in my septum the size of a dime so my nose is collapsing. There was a time when my rash was soo bad that people treated me like I had leprosy. I had painful sores in my mouth that would abscess, so.they pulled several teeth, I wear dentures that cause e grief now I had been on a bone rejuvenater by IV and who knew that you couldn't pull teeth while on it or your jaw may die. I now have necrosis of the jaw. Both jaw joints have disintegrated. The prednisone weight gain and fat cheeks. I have joint and tendon inflammation and best for last Roid rage. On and on.

I'm 50 and don't exist. People say oooh you have such a good attitude...You are the most positive person I know... I tell them about y depression, how i've been and not 1 follow up... My hole personality has changed...I've lost my sparkle. Being in a wheel chair sucks.

Thats my rant.

Good Lord, I don't know what to say. You are having a really rotten time of it. I wish I could send a clever phrase or two that would magically inspire you & leave your depression & pain in the ditch. No can do. I really am sad for you & wish you the very best. We have to pretend we are O.K. a lot of the time & with practice it gets a little easier to pretend. Kaz x

First I want to say that I am sorry you have to deal with so many health challenges that lupus has bestowed upon you. Yes, I concur with you, Lupus does suck. But you keep beating it daily!! Hang in there. Stay positive. We won’t let it beat us. We are here for you.
One thing that has helped me a lot is meditation. It’s free, I dont have to ingest it. Just you tube it, that’s what I do. Start with a short one, like 15 mins or so.
Prayers and gentle hugs to you.

I've no clever comment, except to say my heart really goes out to you. I can't even begin to imagine what your life must be like, but know that here you are never alone we are all here for you. I hope you find a way to feel better.

I said a prayer for you. I also have depression and it has worsened with prednisone and limitations. I hope your team is able to find a treatment that brings back ALL of your sparkle.

I'm so sorry that you're suffering with depression for so long. I too have had really bad bouts of depression since I was a kid (some involving hospitalizations for long periods in psych hospitals including 50 electro shock treatments when I was 19 which never touched the depression really), and am now 73. I've had SLE since at least my 40's remembering all the teeth that had to be pulled because of fractures that happened during the night with Grand Mal seizures I didn't know about. Not Dxed until 2014 though suspected by a couple of doctors a year before. I have Discoid Lupus, Central Nervous System Lupus, and evidently GI track LUpus. Just found out I have Atrial Fibrillation but don't know if it's related to Lupus. Now in Remission since last July so doing much better. But I tend to go on about myself when that isn't what was being requested at all. I'm sorry about that; it's just my way.

And this isn't addressing your own issues. I've found that for me, when I "get out" or do something that relates to other people, even finding some way to help someone who needs it, I do automatically feel better about myself and my situation. It just connects me with someone else and gradually forms a type of interconnection that promotes growth that sustains me.

But I do not have the physical problems that you do, so would never pretend to know what would be the best thing for you to do. And I don't even think that's what you are asking for. You just wanted to "rant" and that's okay too. I am glad you reached out to do that. I am sitting here in my new apartment early in the morning, reading "life with lupus" for a change, and saw your post. I have rarely posted here myself and have been too wrapped up in my own life I think.

I do want you to know that I care and wish I could hold your hand and comfort you somehow, maybe with a cup of tea. When you read this, think of that, and how we're all connected somehow. I'm glad you posted.

With compassion,


Hello stiltgirl

I think rants have a positive place in our life they help to release pent up emotions that we need to get rid of. Crying is also good. Once this is over we can consentrate on being better. I am on a long tapering dose of prednisone due to allergic reaction to meds and lupus flare. I can tell a huge difference in my attitude and the way I talk with people. I don't know a lot about Canada and the systems they have in place their. My mother has a lady from home health come by once a week for 4 hours. She helps her bath and then spends the rest of the time talking with her this has been a great help with my mothers depression. When summer gets here the bus will come take her to the community center twice a week. Do you have anything like that in your area?

I am sending you this reply just to let you know that I care and hope some of these reply's will help a little.


Put your right arm over your left and your left arm over your right now hold as tight as you gently can ...that's a hug from me to you. We sounds like we were raised the same and have similar personalities. I too am in my fifties ( 52 in June) and have had sle lupus since I was 17. At first the flares were few and far between then they started getting stronger and more often when I was trying to have a child. Four miscarriages and one live birth later I started the roller coaster of drugs to keep me in remission. Unfortunately the meds stopped working five years ago ( my son will be 23 this year ) and finding a new combination has been difficult to say the least. Sometimes all we can do is cry and get the sadness out of our system. Just know you are not alone we are all here I am here I will listen give advice whatever you need. God Bless you Stilts. Take care Julie

I am so sorry that you have and continue to suffer so. I share the support that you are not alone. I am so glad that you have reached out to our community to vent. A very important aspect we need to exercise from time to time when struggling with this disease. You have a tremendous fighting spirit and I send hugs your way. ST

Aren't you all the BEE ALL, Putting a smile on my face. Glad to hear others are suffering along with me. Thats a terrible thing to say, I am not alone.

Hugs to everyone.

Dear stiltgirl....I am so sorry. I can totally emphathize with your situation. And you are right...being in a wheelchair sucks, having lupus sucks, having all the side effects caused by sucky lupus sucks. Wish there was something all of us could do to get rid of this lousy disease; however, that being said...and also not being possible....what I have found gives me some relief, is finding anything that makes me matter how short a time frame...just even a grin on some days. I know this isn't much of a solution, there isn't really any solution, but if you can find some little something that gives you a grin, go for it! I also have books on cd's that I listen to at night. I plus in my earbuds, take pain pills, make the bedroom as comfortable as possible (in my case that means very very cool) and try to get "into" the book. You can download or have someone go to library for you. I know this isn't much, but it's something that does give me some relief. I have adrenal insufficiency as a result of years of prednisone use; consequently, I have that "moon" face...kind of like the character they use in the 'Jack In The Box' commercials...yep...that's who I look like...and I am losing my hair...and I have gained 50 lbs.....and on and on and on. There are days I look in the mirror and cry, but there are other days when I just have to laugh. Fortunately, I have a loving and supportive husband and very loving friends, whose senses of humor parallel mine. If you want a "pal" who can commiserate and perhaps give you a grin or two. I also read a book called "Living With Chronic Pain". Don't read just made me angry. Some of the "help" books published for people with chronic pain make me feel I really need one more negative emotion. So, pls hang in there. My prayers and heartfelt wishes are with you.

My heart is breaking for you...I will never even begin to understand what your life has been like, with all you have been through, and continue to go through. All of us here have a great deal of compassion, and understanding what Lupus does to us, and how it effects us....but each one of us is different. TRY to find something that you can shift your thoughts to. Maybe find a hobby or listen to music....find some funny movies to lift your spirit. But, NEVER give up on yourself. My prayers go out to you. Good luck and feel better.

So nice to hear that you have a smile on your face, stilts! I like that suggestion about watching a good movie. Hoping you are having a better day now, stilts, and sending you more {{{hugs}}}! marybeth

stiltgirl said:

Aren't you all the BEE ALL, Putting a smile on my face. Glad to hear others are suffering along with me. Thats a terrible thing to say, I am not alone.

Hugs to everyone.

well god bless you sweetie, for having the tenacity to stay as positive as you are , even thru your depression......i too have had lupus sle for going on 21yrs.....but i have been very lucky and have only had some lesions on my face on occasion,,,,,,,it has really destroyed my back though 2 lower discs are disintigrated.....and i am in terrible pain......i take oxycontin and oxcodone......i will be seeing an internest next month so i can get some prednisone for the terrible inflamation i have.......i too have some serious depression and i also take 3 anti deppresants ........CYMPALTA........LAMACTIL AND OLANZAPINE......they seem to help somewhat, i can barely walk, i use a cane if i do not have the back surgery they want me to have, i will probably end up in a wheelchair also.....i think you are a really strong do not give up......i am praying for you........catspaw1955

Sending you hugs! I am so sorry that you are going through so much. Just doesn't seem right that one person would have so many painful problems with lupus. I hope you will feel a little better soon. I wish the best for you.

I'm sorry about your medical issues. You have more than your fair share. Depression is a normal reaction to so much pain and suffering, as is anger. I think it's good for you to come here and let it all out. We can't change your situation but we can listen.

Depression is such a rotten companion, don't you think? It listens but then pulls you in farther. It seems to be comforting you but is secretly hurting you. It sees that you are hurting but turns a blind eye to it. Other humans are far better companions. Especially those who also hurt as you hurt.

Please come again and let it all out. Hugs to you.

Im so sorry. Things are going well for me finally and ill pray for you. If your having these mucous problems i would cut out dairy. This is very important for us. Stay strong tomorrows aa new day<3

You have every right to feel the way you do. Sometimes when so many bad things happen all we see is negative. I can’t stand the pain or not being able to get out of bed. Most days I count my blessings, I try to count at least 5 things when I’m down. Today my blessings, my beautiful healthy granddaughter , my little dog that keeps me company, my husband, my children, hot bath, good dinner. Please try it. If it doesn’t work keep trying. Good luck to you. You have survived so much, depression should be nothing for you .

I am so very sorry to hear of your struggle .I too have been fighting depression for over a year now this lupus is one nasty disease and the depression can take you down faster than anything.something that has really helped me is a journal.i bought myself a really nice journal and several new pens and I started back in March of last has literally been a life saver for me sure when I read what I wrote sometimes I cry but there are times I read what I what I wrote and say to myself wow and I still got through that day venting is necessary whether it’s here or a journal or friends keep talking and writing you will realize the amazing person you are .