Feeling very down

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Regular Member

Date Joined May 2011
Total Posts : 34
   Posted 6/24/2011 2:34 AM (GMT -6)   
Every time my wife starts to make progress she has a setback. First it was (and still is), these vertigo attacks that have caused her to fall on several occasions. Now, as if she isn't suffering enough, she has a terrible cold with possible sinus infection. She's been on high doses of prednisone for months and methotrexate for about 5 weeks so it's understandable her immune system is shot. With her immune system repressed how is she suppose to fight or get over this cold? I wish her Rheumy would put her on Celcept instead after reading positive results on here. Seems methotrexate doesn't help anybody. I'm not even the one sick and I don't know how much more I can take. When she complains about another symptom it kind of goes in one ear and out the other. I'm losing hope she will ever get better. If it's not the fatigue and pain, its the vertigo which it seems nothing can be done about. All she can do is lay in bed or sit in a chair. Is this what the rest of our life is going to be like? While I work our 3 little kids just play among themselves. They are only 8,9, and 11 and already are learning to take care of themselves. It's very sad.

Regular Member

Date Joined Jan 2006
Total Posts : 395
   Posted 6/24/2011 9:52 AM (GMT -6)   
Hi! Dodd,
So many of us here can understand just what you and your family are going through. Unfortunately, and yes, lupus affects the entire family. And just when you think you are feeling better, you get worse. And that's just the nature of the beast. Lupus used to be a terminal and fatal disease. Now, thanks to early diagnosis and treatment, it is chronic and manageable. Some weeks less well than others. This is where the for better or for worse, in sickness and in health vow kicks in. Or.. slams you in the gut when you have to come to terms that lupus never goes away. Yes, it is sad. But would your kids be better off with a mom who is sick alot, or not having her at all? They are old enough to do alot of their own maintenance stuff, and like my girls who were similar in age to yours when I was diagnosed, they will be stronger and more loving, responsible adults as they share in the care and love of their mom and dad, through dealing with a difficult situation.
I am dizzy and fall alot, too. My neurologist prescribes Neurontin for me, and that has helped alot. And, both my drs. prefer cellcept to methotrexate. Don't hesitate to write a list of questions and concerns to take with you to your next appt. with your wife. I shared "The Spoon Theory" with my spouse and children, and to my 11th/12th grade students in each of my school years when I was teaching. They still remember reading it, and my girls both regretted being so intolerant and angry at me for being so sick. Lupus is a family disease, and the Lupus Foundation, and the threads on this forum, offer lots of resources for dealing with this disease. Knowledge about anything helps, and even your 8 yr. old can benefit from learning about why his mom is so sick. One thing that has helped my family alot, is having dinner time meetings together to decide, to vote,  how I am going to use what little energy I have. If we go to the zoo today, I can't do anything much for the next 3 days, so how will we compromise to get the chores, or the other family commitments done. Trust me, your wife would give alot to be well, and there are going to be times when everyone gets angry about what they want/can't/wish/couldn't, do.

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis, Degenerative Osteoarthritis, Asthma
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. (20-40mg prn), Vit. B12 2400 mcgs, Vit D 1000U and Ambien every night. Advair, Albuterol and DuoNeb inhalers.
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