Let's try again. The thing that jumps out at me is that you have your highschool sweetheart, your husband as your main support and I've got to say the same for myself. There are days that I have to remind myself that not everyone is so lucky.
But I don't think there's anything I can say or do to make those gallons of fluid that are underneath your skin go away and no magic pill for your kidneys. I'll leave that up to the docs.
But the support piece. There are times when I feel like I can't or don't want to burden my husband any more, and now that he's been without a job for the better part of a year, those times are becoming more frequent. So, I have no choice but to reach out.
Is there a support group in your home town, at your church maybe? I'd imagine that your rheumie's office keeps some list of ladies who gather or an official LFA support group, or the local hospital social work department has an idea. Support group for people with chronic illnesses. Another organization that just came to mind is Meetup. They're an online organization and might have support groups in your area.
Can you talk to a counselor, priest friend? I'm nearly 3 times your age and am thinking of the things that helped me over humps throughout the years. But, keep coming back here. WebMD has some find groups and fine informational articles.View Thread
There are 3 of my meds which look the same; I think someone at the pharmacy has it against me-when they get a better deal on another generic and substitute!
Ever realize how much generic keppra, ranitidine and vicodin look alike; but how vastly different their actions are? I occasionally need to check drugidentifier.com or something like that to identify my drugs, too!View Thread
Now that Lupuslisa mentioned it, I have this neat pill 'fob' that I got from a catalog that is meant to attach to a key ring (a friend has since seen them in some stores). It holds just enough pills if you're stranded somewhere and can't get home.
What I find is a challenge is to make sure that I change the meds every year or so, so they're not expired if/when I need them!
I also just saw Lupy's post about "doing her pills." This is a sight as I'm surrounded by a shoebox, something to drink and my pills!View Thread
"Does it make me feel like an old lady? Yes! But it does the job, " I used to line up my 3 pills bottles and bam-bam-bam, I'd knock them down with a swig of water.
The swig of water is still the same (maybe two), but it's no longer 3 pills. How about (depending on the time of day, 10-14. As a nurse, I should know better than one or two swigs, but I like to challenge myself. Every now and then I do more. But I wouldn't be without my pill box, the big one I got from The Container Store, about the size of a fishing tackle! Not the little wimpy one from Walgreen's!View Thread
It took FOREVER for me to realize my limitations and live with them. I mean REALLY understand and live by them. The person who is 'the enforcer, the reminder?' My husband. He's always telling me that I'm too hard on myself and I don't let myself off the hook enough.
Please listen to your coworker, but also listen to your conscience. You know what you need to do to keep yourself healthy (heart, lungs, etc). He, like my husband may have a feeling that you can coast through life, never taking care of yourself. Lupus is one of those diseases that doesn't grant you the luxury of taking the low road of never watching your diet (especially with your renal involvement), brushing your teeth, never exercising.
That is the hard part; your deep understanding and my own family's seeming insensitivity. Then again, it is so possible that they're so busy with their children and their lives...No,, I tried that excuse for too many years.
I ask about THEIR lives, lives without children, show interest in their work, what makes them tick, and at the end of the day, I don't sense any thought that I might have feelings that are worth honoring. Thanks so much for ackowledging.
Years ago when I had to have a hysterectomy, I confided my sadness in my boss (I'm a nurse). I've NEVER forgotten (nor doubt I will) her response, "it's a diseased organ.I It's got to go." Seemed so cold and still does, though I did have the surgery.View Thread