View Full Version : Dealing With Systemic Lupus (graphic pics)

June 24th, 2014, 03:14 AM
I spent the better part of the evening in the ER tonight because of my lupus. Up until about 18 mo. ago the only skin issue I had was sensitivity to the sun. I avoided it like the plague, because I would break out in huge hives.
Then as many of you remember I got the rash from Hades. On high doses of steroids for months, that turned me in to a lunatic. Well because of all the steroids, my skin is very fragile and thin. ( like a 90 yr old) I also get bullous lupus rashes ( mostly in the form of blisters.) The pics show how bad my skin tears from adhesives, and what happens when one of the blisters gets infected. I have never had one get this infected before, is why I went to the ER. They put me on 2 antibiotics and prescribed silvedene (sp) for the skin tears. I am at my wits end dealing with this for the past several months. I am currently waiting on a scrip to be delivered, that should help with the rashes. A little prayer would do wonders for my spirits. ( It has really bothered me lately) Thanks for letting me share

June 24th, 2014, 03:25 AM
Ouch! Ouch! Ouch!

Healing thoughts are coming your way.

June 24th, 2014, 03:39 AM
So sorry for your suffering Marilyn. I pray that you heal well & quickly...

June 24th, 2014, 03:58 AM
Marilyn, you poor, poor thing. I've had a few friends with Lupus, and I've never seen such bad skin eruptions. Oh, does my heart go out to you!

I will definitely be praying for you, for healing, and for comfort.

June 24th, 2014, 04:41 AM
I've seen some of this on FB and I am praying for you daily. I know it must be horrible for you. You are so brave and you do so much for your family and grandkids even though you are having it rough enough to say "No". I trust God is watching over you and pray that he will help your Drs find everything they need to help you heal and be comfortable. I pray more, that He will bring you to a complete healing. Hang in there. God Bless.

Iris Girl
June 24th, 2014, 05:14 AM
Healing thoughts coming your way, hoping the medications help you.

June 24th, 2014, 05:37 AM
Wow, has to have been bad for your to go to ER, hope the new meds does wonders for you.

June 24th, 2014, 05:46 AM
Oh my I am so sorry you are having to deal with this. I hope the meds bring some relief. Pain takes so much from you, physically and mentally. Maybe put on some music you enjoy and lay back and relax. The rest of the world can manage on its own for a bit while you rest.

Get better soon. Will be praying for your healing.

June 24th, 2014, 06:01 AM
I'm so sorry you are so sick. Hope you get to feeling better soon. Sending a gentle cyber hug your way [{Hug}].

June 24th, 2014, 07:01 AM
That looks so painful, best wishes for speedy healing.

June 24th, 2014, 07:21 AM
I too have SLE and my skin was bad this year compared to other years but, nothing like as bad as yours. You have my sympathy and hopefully your new meds will help.

Jean Sewing Machine
June 24th, 2014, 08:29 AM
So sorry to hear and SEE what is causing you so much pain. I hope the meds help you to feel better soon!

Mary Ruth
June 24th, 2014, 09:12 AM
Prayers are with you.

June 24th, 2014, 09:34 AM
I just can not imagine what you are going through. Feel better soon.

June 24th, 2014, 09:34 AM
Oh Marilyn - praying for you here...

June 24th, 2014, 09:37 AM
These look so painful. I'm glad you saw a doctor and I hope the meds work quickly. (((HUGS)))

June 24th, 2014, 09:47 AM
Oh,Marilyn. I feel so bad for you. Hang in there as best you can and know my prayers are with you.

June 24th, 2014, 10:01 AM
Hope the meds kick in fast and will give you some relief. Feel better soon.

Sandy Navas
June 24th, 2014, 10:02 AM
Sending most gentle hugs and lots of healing prayer. I've seen your reactions in person and had no idea you were suffering with flare-ups now. Take care. Like Gloria said - you give so much of yourself to others, it's time for you to get taken care of. Wish I could sooth your pain!

Tina W
June 24th, 2014, 10:40 AM
I am so sorry about your lupus. I know how painful those blister's are my daughter has lupus and I have seen some of these on her. Her lupus has been attacking her heart muscles and kidney's I try to help her as much as I can. She is a single mom of 2 and does everything for her kids. She works full time , is a cheer coach for her daughter's squad, helps out at little league and football games with her son. My very first quilt I made I gave to her and she and the kids cover up with it almost every night. My prayer's go out to you and hope you find some comfort soon.

June 24th, 2014, 10:42 AM
Many prayers for you for a quick recovery!

June 24th, 2014, 12:21 PM
Oh, honey, I'm so sorry. Praying for healing and relief of all the pain and discomfort!
~ Sally \0/

Simply Quilting
June 24th, 2014, 12:26 PM
Ouch. Praying that you heal quickly.

June 24th, 2014, 12:36 PM
Sending along hugs and prayers!

K. McEuen
June 24th, 2014, 12:53 PM
Good grief woman! I remember that one little blister on your wrist a year and a half ago - that was all the beginning of this. Get better soon, we got things to do in a few months!

I'm not hugging you, cuz I don't want your remaining skin to stick to me!

Claire OneStitchAtATime
June 24th, 2014, 12:55 PM
Health problems are the pits. I hope this settles down to a manageable level soon.

June 24th, 2014, 02:57 PM
hope you find the right combination of meds to help in controlling this. Sorry to see such a flare.

June 24th, 2014, 03:49 PM
My heart goes out to you. I've seen first hand how tender skin is like that from when I worked in a nursing home years ago. Everything you do has to be done with such care it must make everyday a bit of a challenge.
Times like these, I wish things like magical healing was an actual thing (like you might find in a book or movie) and I could just send healing to you thru the internet. :) lol Sounds silly I know, must be the books I've been reading lately.
I do hope you feel all the love and concern from your friends and family and it gives you some comfort.
I don't pray much, but I will certainly attempt to include you in them when I do.
God Bless

June 24th, 2014, 04:35 PM
Praying for complete healing and that this never happens again Trish

Miss Sheri
June 24th, 2014, 05:19 PM
Marilyn, I'm so glad you could share this here... what a frustrating burden for you to bare. It reminds me of Job, in the Bible. I will be adding you to my prayers too, and sending my love and friendship to you in abundance.
With love, Sheri

June 24th, 2014, 05:41 PM
I hope you feel better soon!

June 24th, 2014, 05:57 PM
Hey Marilyn, I remember when you came to my house with the other girls. You had a hard time going up and down the stairs, but you charged on and kept up with us for all three stories, room to room. You were very gracious about it. It was humbling and I was so glad you came. We are friends and I am so grateful for you. You crack me up... and I like that in a person. I prayed for you today. Asking God to send you rest and comfort in your body. To give you peace of mind and healing from the top of your head to the tip of your toes! Hang in there.

June 24th, 2014, 06:00 PM
Keeping you in my thoughts and prayers Marilyn!

June 24th, 2014, 06:00 PM
Oh my God Auntiemern, bless your little heart.. I'm so sorry you have to endure this, it looks awful. You were very courageous in sharing these photos with your online family. We're here for you, and praying you find some relief soon to help you have a better quality of life.. God be with you...

June 24th, 2014, 06:16 PM
Oh Marilyn that looks so painful. I do pray that you get some relief really soon. Hugs, Genny

June 24th, 2014, 06:22 PM
Oh my goodness, how you must be suffering and for so long. My prayers are with you. I hope the meds will help in some way.

June 24th, 2014, 08:20 PM
I'm so sorry you are suffering with your Lupus this way. It's bad enough without infected eruptions. My prayers and well wishes are with you, Hon. ((HUGS))

June 24th, 2014, 08:28 PM
Marilyn, Prayers going forward for your healing and your peace. Phil:4:6,7God Bless and Keep you in His Loving Care.

June 24th, 2014, 09:27 PM
Oh Marilyn, so sorry you are dealing with this nasty thing. I am sending healing thoughts and prayers your way.

June 24th, 2014, 09:40 PM
I'm so sorry you are suffering with this rotten disease. I know I'm joining many others on this forum in praying for you. It's a testament to who you are as a person that you are always here, cheerful, helpful and kind. Bless you.

June 24th, 2014, 09:42 PM
Praying for you that you heal quickly and completly. May God
touch you thru all the prayers being sent.

June 24th, 2014, 09:56 PM
God bless you. Prayers for your complete healing.

June 24th, 2014, 10:04 PM
Oh Marilyn, I'm so sorry you have to go through this. Sending healing thoughts your way. Take care.

Ginny B
June 24th, 2014, 10:22 PM
Oh my gosh Marilyn. So sorry you are experiencing this. I hope the meds help settle this down. In the meantime, go and rest and we will all be here sending up prayers for your recovery and sending tender ((((hugs)))) your way.

June 24th, 2014, 11:53 PM
Prayers for you Marilyn...my mother in law died from Lupus about 28 years ago. She didn't take care of herself and was a grieving widow. My husbands sister would be 72 years old had she lived, but was given an experimental drug when she was 21 that didn't work for her and sadly, she passed. There is a lot of the disease in my DH's family and it always worried me about my 2 girls. The pediatricians always said that it clusters in families, but isn't hereditary. Every ache and pain they have I get the Dr to check for it. They are 21 and 23 and so far, no signs of it. I know how hard it is to deal with this disease.

June 25th, 2014, 01:31 AM
I am including you in my prayers...I hope it heals soon...you are an inspiration to us all...you have physical limitations and are still thinking of others always...hugs and blessings to you..

June 25th, 2014, 02:02 AM
Prayers going your way!

June 25th, 2014, 02:09 AM
Oh I hope you heal fast. Special prayers already said. I hope all the meds help.

June 25th, 2014, 03:08 AM
Thank you all for the well wishes. If I didn't do all that other stuff, I could so easily wallow in self pity...and so many others have things much worse than me. Gotta take care of those sick kids in the hospitial... It keeps me grounded, and is my hearts mission.

June 25th, 2014, 03:22 AM
OOOOO that looks painful. Here are some hugs ((hugs)) and kisses to make it better.

June 25th, 2014, 03:56 AM
feel better soon ((((((((Marilyn)))))))))

June 25th, 2014, 07:46 AM
Healing thoughts headed your way!! I hope you feel better soon!

June 25th, 2014, 11:06 PM
So sorry for all that you are going through. Prayers and wishes for good health your way

June 26th, 2014, 12:21 AM
so sorry this is happening....looks very painful. I sincerely hope that the new prescription works!

June 26th, 2014, 04:15 AM
Sorry for your pain. Hope you heal quickly.

June 26th, 2014, 10:39 AM
Marilyn you are so right about having something to occupy your mind and hands while dealing with this. You are a brave and courageous woman and I truly hope the meds will give you some relief quickly. Tender :icon_hug: sweetie.

June 27th, 2014, 01:21 AM
OMG, I feel so bad for you. You poor thing, it looks so painful. I hope you have a speedy recovery.
I am sending you a BIG BEAR HUG. Feel better soon.

June 27th, 2014, 08:59 PM
Marilyn, how painful that must be. Praying now that you heal up quickly.

June 27th, 2014, 11:38 PM
OUCH!!! So sorry you have to go thru this!!!! Sending big :icon_hug: your way!!!

June 28th, 2014, 01:54 AM
Oh... That looks painful... Praying for some relief for you...

June 28th, 2014, 10:55 AM
Prayers for you! Hope you are feeling better soon. Silvadene is a wonder cream! Sulfa & and real silver ground to a fine powder!