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Posted By : Disneyfan - 6/7/2017 7:16 AM
I was diagnosed with SLE after 10 yrs of doctors trying to figure out what was wrong with me. Its killing my life. My husband thinks I am always sick and use it as an excuse to get out of house work, cooking, and sex. I still muster up all my energy to work full time come home and take care of 3 kids. sex.....how can I even I am so exhausted and most of the time so locked up in my joints or covered in rash or depressed. he believes that since I am sick I should allow him to get a side chick to just help him with his needs.......He feels I am good for nothing. I cant have sex. I cant cook and clean. He feels I am a horrible mom because I cant get on the floor and play or take them to the park. I just want to sit and rest. He doesn't want my illness to become his burden. he doesn't want to carry a heavier load to compensate for my lesser load. he keeps telling me to hurry up and get over it. All I can do is lie and say I will. Knowing darn well, I will never be better. he reminds my kids that its my fault they are bored. he claims if we divorce he will take my kids because he feels I don't take care of them. I am on Plaquenil and 50 mg of steroids a day. I recently stopped the Plaquenil because it was causing me to have moments of complete blindness. Why does everyone think that pushing me and keeping me moving is best? Its not. Rest is best for this disease but everyone says that's an excuse to sit on my butt. I need help. There has got to be a way to make my loved ones understand or its gonna win.

Posted By : Butterflake - 6/7/2017 12:16 PM
Disneyfan, your Prince Charming is a jerk. Just to bring you up to this century, today many men who have working wives help with the cooking and cleaning without being asked. If he divorces you no judge would give him complete custody. Why would they? Just because you can't play with your children? Keep in mind your children are hearing all the abusive things your husband says and they will grow-up thinking this is proper behavior for a man and woman. You may find it helpful to talk with someone at a battered woman's shelter who understands what you are going through. I hope you have insurance and can take time off from your job for medical appointments. If you can't take time off work perhaps someone you can confide in will be able to watch your children.

Please read the spoon theory at www.butyoudontlooksick.com and click on "spoon theory" to give you a better understanding of Lupus time management. Every Lupus case is different, but I don't think any Lupie should continue the pace you're running.

Did a rheumatologist diagnose you? They are the specialists who diagnose and treat autoimmune diseases. I think you need to go back to your rheumy and tell him/her that you stopped Plaquenil. No one should stop or start a med without at least talking with the doc's nurse. Your rheumy may ask you to see an ophthalmologist for your eyes and he will probably place you on another medication to help you reduce the amount of prednisone you're taking. Prednisone at the dose you are taking is an emotional rollercoaster and that sure doesn't help things at home. Explain your home situation to your rheumy if you can. There may be more he can do for you. If you decide you don't like your rheumy, try another one. Many of us have been to more than one rheumatologist. I think you should also consider seeing a psychiatrist or talking with your primary care about your home life. Either one can prescribe psych meds. I've seen the same psychiatrist for 14 years.

As for your questionnaire, for some persons lupus doesn't disrupt their life much, but most who get lupus go thru a grieving process over the loss of their previous life. With proper medical treatment, rest, sleep, and eating a balanced diet your life can improve. I really hope that I haven't scared you away and that we hear from you soon. Things will get better! Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, anxiety; CVID (Common Variable Immunodeficiency); IVIG infusion monthly; Hypertension; Osteoarthritis of the spine, right knee, fingers, toes; Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: Better living through chemistry

Posted By : Dustmite - 6/25/2017 7:12 PM
Disneyfan. I'm sorry it took the doctors so long to diagnose your lupus. Your husband is wrong about bringing in another woman, not helping you with housework and your children and not supporting you and the way he talks to you and to your children about your disease. He is a jerk (and I'm using a nice word there). Honestly I think you would be much better off without him and get joint custody of your children. Don't go off your lupus medicine, that can cause a flare. I am on the same medications you are. I also take gabbapentin. I was lucky enough to be diagnosed after only one year. I have SLE at 57. My children are 35 and 37. So it is a little easier for me. I was diagnosed this Feb. It was kind of a shock. I was also diagnosed with stage 3 kidney disease last July. I have a lot of days that the housework and laundry doesn't get done and I can't crawl off the couch. It has been a big adjustment for myself and my husband. We have been married for 39 years. I am blessed to have a patient man who helps me. I have read everything I can find about lupus. My husband and I have talked to my rheumatologist on what I can expect as this disease progresses. I get a steroid injection every two months, that helps out a lot for my small joints and the gabbapentin helps for the day to day. I'm beginning to see a difference with my antimalarial medication. I'm in month four. Honestly you need to surround yourself with positive people. You know better then I that stress causes flares. Have a heart to heart conversation with your children about your disease and what you can and can't do, now and over time. Stop taking all the garbage your husband is feeding you and worse feeding to your children. Surround yourself with positive people and get rid of the negative in your life. Your life and health will see and feel the benefits. God Bless You and Your Children.

Posted By : Butterflake - 6/25/2017 10:41 PM
Hi Disneyfan. Unfortunately I think that I scared you off, but if you are still lurking out there and decide to read the posts from Dustmite and me there is a great book that everyone with Lupus should own. It's "The Lupus Book" by Daniel J. Wallace, MD. I own two editions the latest is edition 5. Many of us on the forum have a copy. It seems like I constantly refer to mine. Anyone else who is reading this should buy a copy too.

If you are embarrassed about your home life, please don't be.Before my diagnosis I was working full time, running like mad to keep up the house, and taking classes to finish my BS degree. I became friends with a woman who didn't work. She and I were talking, but I had to get home to make dinner and get it on the table before prince arrived. After I finished dinner and cleaned the kitchen, I had to study for the exam the next day.

Out of nowhere she said that her husband was cooking dinner so she would have more time to study. I had an epiphany which I knew all along. My prince was a demanding jerk who only thought of himself and used every drop of me. One year later I divorced him and a huge burden was lifted from my shoulders. Being without prince did wonders for my soul, my self esteem, and for my little girl.

Now I am with a caring, thoughtful, loving man. He only knew me two years before I was diagnosed with Lupus yet he's still with me. You've already been handed the Lupus card. Don't you deserve something better Sweetie? Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, anxiety; CVID (Common Variable Immunodeficiency); IVIG infusion monthly; Hypertension; Osteoarthritis of the spine, right knee, fingers, toes; Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: Better living through chemistry

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