I feel helpless....was diagnosed with lupus November 2012 and it has been a whirlwind of hell since. Everything that can go wrong has gone wrong....I've suffer fro chronic pain related to spinal stenosis and Lupus and RA and Fibro...I had a bad reaction to Imuran that caused sores all over my body. I'm currently on Prednisone 25mg daily down from 60 but that has caused cataracts in both eyes and osteopenia that has resulted in a broken pelvis, hip, femur and right foot from falls. My mouth is rotting out and I need four teeth pulled. My doc just called today because I've been on oral abx for a month now and my WBC and Neutrophils are going up despite that so he thinks I might have a bone infection. I'm so tired I fall asleep in the car when I leave the dr or a store before I can drive home. I'm only 36 and have 3 boys, 4,5 and 12. I feel like a horrible mother. I am a horrible wife. My mom works for a dentist and thinks my infection is from my teeth because I need four pulled because they are decayed. I'm tired if being in pain I'm tired of being tired. I want my life back. I keep thinking it has to get better but it doesn't. I used to be a nurse and worked full time, managed the house, ran PTA...now I can't remember the last time I took a shower. I can't manage our money anymore because my memory is so bad. My dr is the sweetest guy in the world but I scare the hell out of him he doesn't know what to do with me. My rhemy is just happy my kjidneys are back to normal because when I was first diagnosed I was in kidney failure and have had a few incidents since then. A few weeks ago I became confused and out of it, my husband took me to the ER. My family thinks I was over medicated on pain meds but my potassium had dropped to 2.4. They kept me for IV potassium therapy. Because they were so freaked out about pain meds I'm not on any right now...and I'm in so much pain it feels like im being stabbed when I walk. I'm also anemic and have had 3 blood transfusions since diagnosis. I also have endometrosis which causes painful cramps and the inability to have sex because it's so painful.
Please give me some advice for sanity...for hope. I feel so lost. Thanks for listening.
I’m so sorry things aren’t going well for you. Keep on fighting. I know it must be hard but I know you can pull through, you’ve gotten this far. I will keep you in my prayers. All the best.
I will tell you that YOU ARE NOT A BAD MOM because of your illness. I struggle at times with that myself but I gotta keep telling myself the truth. Truth is that I have a disease, I am not a moral defect. It is not my fault I am sick.
I actually can't think of any 'wise words' that may assist you. You are having an absolutely terrible time of it & I feel so very sad that you are trying to battle your way through this. It will improve, the right combo of meds & treatments will be arrived at & you will be able to think a little better & then start structuring your life & family a little differently & one day the morning will be again a blessing & something to look fwd to. You will be able to live well with Lupus.
Christie,
That sounds like an awful lot to being going through. I can’t even imagine all of that. Do the kids take care of themselves? Do you have any support system? I am glad you can share here what you are feeling. I am so sorry all of that is dumped on you. I am glad you were able to share with us your pain and total frustration. I just want you to know we do care about you and feel very bad for your pain and what you are dealing with. I’m thankful you do like your doctor. I am not in any place to give you any advice. But I do care about what you are going through. You did the right thing in sharing it here with people who care. You are in my thoughts and prayers.
There is no magic potion to lupus unfortunately. I was at my Rheumy yesterday and she was just as frustrated with me and my case and I have been fighting it for over 23 years now. Everyone has different symptoms in different systems of their bodies and they find it hard to do studies on meds because we patients may all have many different reactions to the meds. It’s a matter of finding the right combo that fits you and that takes a lot of time, trial and error. Keep coming and venting here and cry on our shoulders when you need to. It helps because you are most certainly not a bad mother or wife. We didn’t ask for this disease. There will be better days and worse days. Just don’t overdo it on the better days. Learn to pamper yourself and spend quality time with the family. Love yourself. We love you. Sending you healing prayers and healing hugs ~ Maré
I am so sorry for what you are going through, it sounds awful. Maybe your rheumy can refer you to someone else? And being a Mom with a illness is so hard. Give yourself grace, I am sure you are doing the best you can. i know my kids had to adjust also. Mine were older than yours, but it was a big adjustment for the whole family. It took some time, but now we have a new normal. I guess my other thought is do you have any support? A group, church, friends that are willing to help even though they dont really understand. I will pray for you and I know sometimes I have to take this life a minute at a time.I wish you all the best, and help and healing.
Oh, I am so sorry but I do know how you feel. I was just diagnose with Lupus 8 months ago. I am still learning what is going on with my body. Can't give up, Hang in there it will get better.
My heart goes out to you. Taking care of three kids is hard enough without dumping Lupus and the other autoimmune diseases into the mix. When I wake up in the morning with all my symptoms, sometimes I think I would like to just die. Then I realize that I don't want to die - I just want the pain to go away (physical, emotional, spiritual). And then I remind my self that if I'm alive, there must be something more for me to do...not necessarily physically, but a smile at a child, a love you whispered in an ear...we can still make a difference. Your kids won't remember your illness as much as they will remember you loved them despite everything. You are in my prayers. Susan
I am so sorry about what you're going through. I can only imagine how hard it must be for you right now. I was also 36 when I found out that I had Lupus. Fortunately for me, my kids were already almost grown. There have been several pretty bad months here and there over the past few years, but there have also been a lot of wonderful times with friends and family. Please hang in there and hopefully you and your doctors can figure out the right combination of medication for you and you will get your life back! I will be sending you kind, loving thoughts and prayers.
I'm so sorry for all you are going thru. I sure hope things get better soon but please don't think of yourself as a bad Mom or bad Wife. Surely your family knows how hard it is for you to not be able to do things you used to and are more than happy to help you in any way they can. They love you and will always be there for you. You sure have alot but try the best you can to keep fighting and keep praying, I will keep you in my prayers as well.
My dear child. My heart goes out to you. First of all, you are not a bad wife, mother, or a bad person. You have a heavy burden to carry. Is there anyone you can rely on to drive you to your appointments? Perhaps this same person would go into the Dr’s with you, two set of ears help to understand and/or ask questions. It is completely understandable your feeling overwhelmed. If there is a way, between yourself and your doctors to prioritize your issues, perhaps you may feel more in control of your life. Pain is a priority, what alternatives have they provided, or suggested? Don’t give up, keep fighting. Reach out to family, friends and if you are a person of faith, reach out to a minister, priest, or whomever, and continue to write into your support group here. You are not alone. Will pray for you.
Thank u so much for all the encouragement. I do have an amazing family…my mom helps a lot with my kids and my sister goes to a lot of my appts especially when something is wrong or its a new doc. And I have three amazing boys. Im slowly coming to terms I wont be who I was…but what is the best I can hope for? Will I always be easily fatigued? Will I always be in pain? Rashes? Swelling? Will It always be about controlling my symptoms?