View Full Version : New to the forum, looking for help

01-23-2008, 04:58 PM
Hi everyone. My sister has had SLE for 10 years now (she's 34) SO, SO, sick with numerous other auto immune diseases now as well. We are very close, she is at the bottom of the barrel right now so to speak. I'm trying to think of a (new) way to give her encouragement.

She's frustrated and is really looking for a reason to keep on fighting like she is/has been. You know, a light at the end of the tunnel, or an answer.

I have to be the strong one while I speak to her because I'm the only one in the family she'll tell everything to (because I don't fall apart) but I just keep crying about how sad I am for her. It's been a rough couple of days. I want to help her, make this go away, ha, I know. Even for a day, it would make such a difference....

I don't know what to do. I don't want her to give up this fightl. Is that me just being selfish? Doesn't she have a right to be done if she is sick of all this pain, dissapointment and misery?!


Tearfully Frustrated

01-23-2008, 05:49 PM
Oh, the wonderful Lord knows you are not being selfish and so do we. It is hard watching the one you love slowly disappear from who they once were. Yearning for them to come back, be whole....

Have her come here, if able to and read how we are surviving each day..what we do alleviate our symptoms....how we pick up our spirit. For me, I am scared and hide behind my humor. If I have a okay day, I pray and hope for another. If I have a rotten day, I pray and ask for one.

Or print out a few threads and let her read us. There are a lot of wonderful, gifted, happy, sad...in remission, newly diagnosed, latter stages of the disease here. Maybe her words can help another...expression releases a lot. We don't patronize... we care.

And if not, I am happy you found us...just because you are not the one with Lupus you are welcomed to talk about your feeling just like you are doing at anytime...for anything.

Your words are a bit vague, SisterC...as in the progression and where it is at for your sister. Share more if you like, and we can give you better ideas. Is your sister spiritual? Is she able to leave the house? Do share...

Is she seeking assistant to be "done"? Or speaking of being "done" with it? Done as in frustrated or done with living? I have felt both.

It is a heavy load to carry, you being the only one she confides in. I am concerned for you too. Do you have anyone near you, in person that you can share your tears and pain with?

You sound like me, a sponge, we absorb and feel others pain, there sadness and feel helpless...I know you hurt too. You and your sister are in my prayers. Thank you for looking out for your sister.

..squeeze a tight hug.

01-24-2008, 09:02 AM
Thank you for your kind words. What my sister is having a hard time with is finding a worthwile reason to keep trying, and keep fighting. On top of the SLE, which has been in a flare for some time, she is struggling with Crohn's, Fibromyalgia, Diabetes, Thyroid disease, Sjogren's, and Rheumatoid Arthritis. Her doctors tried Remicaid w/ Cytoxan to help the Ccohn's but had a heart attack, she was allergic. Then they tried Humira but she was put on steroids and can't take Humira while on the roids. She hasn't been able to eat really at all in 12 days. Goes to the hospital for "banana bags" and fluids when she needs to. She's also in AA- 18 months sober, but of course has to have pain meds to manage. She told me she's thought about quitting all her meds, sick of dealing with her pain and doc's don't seem to know how to help her anymore, just keep ordering more tests and labs. She's got a great Rhumy doc for 10 years now.

I try not to let her illness bother me, try to stay strong and keep it inside (very unhealthy) let some tears slide down every now and then, usually when I'm by myself. My fiance is very supportive and understanding, new my sister before he met me.

I think the only reason my sis continues this fight is because of me. She knows it would destroy me if she took her life, as well as my dad. She tells my I'm her rock, but I'm not feeling too solid right now.

Thanks for listening, still feel pretty hopeless.

01-24-2008, 10:13 AM
Hi SisterC,

I can read she has three things worth to keep managing the disease for. A child of God...Herself. You and Dad.

In handling, caring for the physical affects of the disease, is your sister ensuring care for her spirit and mental side too? Those two parts help me through the physical. And when my mental defies me..my spiritual side, my beliefs guide me to a safe mental self. Is your family spiritual in any form? If not, perhaps seek that path and I know personally it has guided me through when I was lost. I blend Christianity and Buddhism.

I also find you can't fight the disease, but find ways to manage it.

Though I do not have a myraid of diseases nor advanced in stage..I have Lupus, Sjogren's and GERD and been through three back surgeries, hand surgery I do know frustration. I know anger. I know to hells with it all. I know the hating of it. I know the hunger of a full life...as I've tasted it. Regardless the size of the ailment, being humans the reaction is quite the same for all us.

Example..eyes...simple as that, when they burn, swell, dried like potato chips, red like a road map and I can only tolerate darkness I can get angry because I have to change, swearing I would rather have them plucked out then try to see out of them. I adapt reluctantly..then I accept. Close the drapes and blinds, dim the lights, don the sunglasses, stay away from the PC...I hide, take a nap. Adding the dim switches is a great thing....

With the stress and frustration and seeming like there is not end to the disease, sometimes we have to find ways to calm ourselves down. We know stress inflames it...so I would suggest her to find an avenue to help with the frustration of wanting to stop fighting for herself. I'm not preaching....just suggesting. Bible study, church sermons. I can suggest books on finding spirituality other than the Bible. For me, I believe without faith, you also feel no hope.

Sometime even when we don't feel like it, we have to eat. Eggs, high protein, rice with butter for calories, smoothies made from yogurt, berries, ice cube and protein powder blended.....

For you, please come here often...release your frustration too. Diseases affect everyone as you can see and feel. Have you sought help with your emotional side. Just someone to talk to professionally one on one. It can be a great experience...a sound board, without feeling judge. I know you must get angry too. I've been on that side of a disease too. My Mum had terminal cancer.

Try to make happy days for you together and too share your tears with her. It would be selfish of her to think you can carry your load and hers too. Bond in the anger, the sadness and the bridge to fight for a calm will be stronger. Two ply is stronger than one ply! Cry together, laugh together, tell her your heart..it will help both of you to be strong for one another.

Since I only know what you have expressed..I tried to touch many options and made assumptions to help you. It maybe off base, but it is a start, eh?

Praying you keep your wellness and praying your sister finds hers. Wellness for us comes in many forms. Like...a day with only half the pain is wellness.

I am here...and so is everyone here for you. We happily with warmth and care welcome your sister too. It can be a safe place for her to express her heart too...


01-24-2008, 10:16 AM
Welcome Sisterc,

I'm so sorry that this weight is on you - but also glad that your sister has your strength to rely upon.

My thought is to encourage both of you (for different reasons!) to talk to either a counselor at the hospital where she is receiving treatment, a clergy member at your place of worship, or other outside support. You need added resources to help you cope with the issues her illness has brought upon you and your family. She needs additional support in getting through this very very difficult time.

Please encourage her to join us, there is so much knowledge and support on this board, it is a lifeline for many of us!

And please - post and visit often. We will offer the knowledge and support that we can.

Gentle hugs and warm support -

01-24-2008, 10:16 AM
This is a very difficult subject for me and one that goes straight to my heart. I know too well what it is like to watch your loved one lose all semblance of their former selves because of this disease, the side-effects of its medications and the hopelessness of never getting better. My daughter fought long and hard to survive this disease, there were times when she wanted to give up, but she continued to fight. We watched her, helplessly, as she continued to lose that fight.
She believed that the fight was necessary because she had an important role to play as per God's plan. For the short time that she was here, she believed that she was here for a specific reason and that God had never abandoned her. That reason could have been something as small as putting a smile on another human-being's face, or it could have been as grand as being legend and leaving a legacy of love, trust, spirit, compassion, faithfulness, justice and kindness. I say that she did, indeed, leave that legacy.
No one knows what their true purpose is, but we live day by day on the faith that we do, indeed, have a purpose. So, we live our lives constantly striving to be God-loving and God-Faring individuals. By doing so, we can achieve our purpose. We live, day by day, on the faith that we are an integral part in God's great plan. That we are, in our hearts and our minds, perfect because we were made in the image of our God. That all the goodness and beauty of the world are available to us if we only accept and believe that it is!
Both you and your sister are valuable, worthy and much loved people. You have touched the lives of people that you don't even know. You have made a difference in the lives of someone whom you have never even met. You are more powerful than you even realize! These seemingly small measures of your oneness with God may go unrecognized by some, but they are never unrecognized by God! That is what makes living life worthwhile, even through our struggles with illness, pain, disappointment and unkindness.
As our loving and most spiritual Oluwa has said, this is a place where you both can come to affirm that you are indeed loved..both of you! We are always here to help you, to give you answers, to support you and your sister in this most difficult time with her health. To let you know that you are never alone, we truly understand and we want nothing more than for her health, your health, her happiness, your happiness and her strength and your strength!!
Peace and Blessings

01-24-2008, 10:59 AM
Your sister sounds very much like me. I have struggled with Crohn's disease for 28 years, and I was diagnosed with Lupus (along with Raynaud's, Fibromyalgia, Rheumatoid Arthritis, and Osteoporosis) 4 years ago. I have many days that the thought of eating is absolutely intolerable - even the smell of food makes me queasy. My insides rock and roll like a sea in the midst of a storm. Those banana bags are like old friends to me. I have had so many IV's, they now have to put central lines in me whenever I go in - not much peripheral left. I have had surgery for removal of parts of my intestines 4 times, when the disease got so severe that the swollen areas blocked passage. I have sworn on many occasions that there is no more humiliating disease than Crohn's, then along comes Lupus to make me look like a walking Leper. hahaha
How do I keep going? Faith. Faith that I have reason to be here, and that whether or not I ever see the reason, He knows. We touch people even when we don't know that we have. We learn from our disease, and our doctors learn more about it, too, from our reactions, symptoms, and descriptions. Combinations of inflammatory diseases make diagnosing and treating much harder (according to my Rheumy). He was so sure that my Crohn's was misdiagnosed Lupus, he asked my Gastro guy to do a biopsy of my lesions with the next colonoscopy. Clear diagnosis of Crohn's. It would have been easier the other way, but it was not to be. I, too, took Remicaid - for 2 years. It helped a little, but the arthritis continued to worsen (I have several deformed joints in my hands, for example), so the Rheumy asked the Gastro to stop it. Then they tried Rituxin (a chemo agent) to control the B-cell lymphocytes that go rampid with Lupus. It helped some, too. All these things give me hope - that light at the end of the tunnel you asked about. Hope that even if I do not find relief, the doctors will learn something that will help others. At least the suffering is not for nothing.
I also find distractions help quite a lot. When I am terribly uncomfortable, I look for whatever interests me enough to get my mind elsewhere. Most of the time this is possible, if you push yourself to really look for something that "grabs" you. It might be a new movie, or an old favorite that makes me smile. It might be crocheting something for someone I love. It might be writing a letter (always typed - I can't write much anymore). Books are also fond friends for me, and I read a wide variety of things, depending upon my mood. When everything is beyond me at the moment, it might be music nicely playing something that makes me feel good, while I close my eyes and let the sounds wash over my broken body. I envision waves of warm water caressing me and soothing the cramping, aching, burning sensations that have brought me down.
Soothing, warm baths are nice, too, with a fluffy, soft towel to dry, and a flowing caftan (no waist, please!) afterwards. I have a gown/day dress of flannel that is almost worn out!
Tell us some more about your sister, so we can try to touch more specifically upon things to help her. This is a site for reaching out to others who can caress your spirit, and the people have genuine caring in their souls. Try to get her to read some of the posts - they are amazingly on target (for me), and they make me feel not so alone. This is really big for someone about to give up.
Thank you for caring enough to look for help for her. Remember, we are here for you, too.

Hugs and prayers,

01-24-2008, 11:13 AM
First of all, thank you, THANK YOU to all of you who have replied. Tears are streaming now, just reading what you all have to say. Such great words of wisdom from those who truly know. You are amazing.

When my sis called me the other night she said she's "having a hard time", and needed to talk. I knew this meant it was bad. So I listen. I think what's got her in such a bad place right now is anger. Anger which she stuffs down, and stuffs down because she doesn't want to deal with it. Anger at the doctors, and others in our family. I told her after stuffing down the anger all these years, especially lately, she's "full" ha ha. I told her "you need to empty your recycle bin". Made her laugh, she said it was a good way of looking at it. I told her, she should write a letter to the doc's and get off her chest, and out of her body, all the things she has been wanting to say but can't. Told her to try the same to others she is angry with. That when she was done, burn the letters, or hide them. That it might help knowing nobody would see the words but her, it might be cleansing for her soul.

She's knows God has a purpose for her, and that maybe she's here just to lift up someone else, or put a smile on someone's face. She's read the books, she's talked to a therapist (years ago).

She said a friend shared a quote with her, "I don't always know what I should do, only what I shouldn't". Says it helps her. She talked about wanting to drink and just mask all of this pain, but knows it will cause her more pain in the long run.

Thank you again to everyone, you have lifted my spirits, just with the sense that I am doing good in being there. My heart goes out to all of you.

01-24-2008, 05:49 PM
Sisterc, I'm late to add my post to this thread, but had to tell you how touched I am by your devotion to your sister. How special that is, and how special you are to care enough about her to search for something...anything...to help her. You've received so much good advice from some very caring people here. Let me just add that when I found this forum, I was terrified, angry, devastated, alone...and absolutely sure that this was all a big mistake. Well, now I know it isn't a mistake - it's all too real. But, now I have this place to come to and I'm not terrified anymore (well, a little scared sometimes maybe :oops: ) and I have people who understand to share my anger and pain - I don't feel alone. I hope your sister will stop in and read some posts. It might make a world of difference for her. By the way, I think your idea of writing letters and then burning them (or hiding them) is a great suggestion. And remember: this is a great place for you to vent, too, SisterC....you need it too!