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Ann, you aren't being whiney- it's called venting and it's a way of "dealing with it"- and you ARE deaLing with this. You are allowed to be unhappy with this, you are allowed to not want to accept a negative outcome, you are allowed not to have to handle this on your own, you are allowed to seek others.
Let me help remove one stumbling block: "the faith thing." Stand by- cause I am awake and talkative. :-) I bubble over sometimes and can't contain myself 'cause I KNOW that I couldn't get thru this mess without Jesus. I don't mean church or anything organized- that is something you come to seek on your own at His direction. I was down and out in fear in 1971- about to have breast biopsies for cancer when my twin babies were 4 mos old and I had 3 other children to raise. I was scared out of my wits at what would happen to those children if I had cancer. I read a book about the Bible and was led to ask Him to be real and personal to me. I had the greatest calm come over me- and honestly feared no longer what was about to happen. I knew that He was in control. Nonetheless, even tho I came thru just fine, I lived an awful life by His standards until about 4-5 yrs ago. I sudddenly heard Him call me to obey Him. I know it sounds goofy as all get out- but I was led back to being obedient to His word in the Bible. He has so richly blessed me with His protection and comforting. You see, in our weakness we see how perfect He is. It's not until we run out of ways to do things ourselves, unsuccessfully, that we begin to look away from ourselves and to Him. I can't do anything BUT share with anyone else who is hurting or confused or feeling very alone- that He alone can calm the storms by speaking. I have no idea why He allows this desease in my body. It really doesn't matter. I don't wish it on anyone else and He is with me every step of the way. I don't want to offend you or put you off or try to "convert" you- I just know what He promises all of us- His forgiveness, His truth, His comforting and His love. All we have to do is ask. He is what I cling onto when it's rough. Would your father want you to stay away 'cause some group of people had mad you feel guilty and ashamed? Not God, He's waiting to welcome you back into His loving embrace (in spite of the guilt-making humans) :-) He's where it's at! I promise- no more evangelizing!

As far as what everyone appears to have lots of: time to read. Nahhhhhhhhhhh. Well, actually I have a peach of a job that allows me to do just about what I want during slack-time, and on my shifts there's plenty of that. Besides, my kids are grown and live close by; if I need anything I can ask. My husband is wonderfully supportive and is retired. he has taken a major burden (the house) off my shoulders. So I have time to read books- and I'm a "fast skimmer."
Just reading what you wrote made me think instantly "Too much". It seems like you are trying to do (or doing) too much. I just learned about the FM this week- and that's what I am struggling with: not allowing enough priority for adequate rest. With all that is going on in my body, I don't allow for the tissues to heal naturally. It seems like there are always 10 more things to do & if I feel just a little bit better today I'd better tackle them before I feel any worse. Sound familiar? It's a trap- cause if you overdo, you lose precious ground that you have gained. I call all this opposite-world. Everything is opposite to the way we think it should be. Sorta like " If I am a good girl all this will be okay." Then we are trapped into thinking that we have control and if we get sicker then it's all our own fault." WRONG! There is a balance and I am beginning to feel that if we calm down and give up the panic, we will eventually begin to learn to sway with the tightrope and find the balancing easier.
You may never find a lot of time for reading- but while you enjoy your computer time- you may be learning and reading, too. It's hard to verify what someone tells you if you don't have any other sources to check it against. The other sources don't have to be books, tho- reputable medical and health foundation sites online are every bit as legitimate (maybe moreso) as the printed word. I'll printnout your last post and try to sort out the labs with the book I have and get back to you on them. There are a couple of tests that are good predictors of whether your kidneys are likely to be involved on down the line.
Like you, I have gained so much knowledge from these boards. I think the bond is that we are real and share experiences and our vocabulary is so accurate. The exposure to each other is so significant, because we are available and understanding, and encourage venting. Our medical team-players only have about 15 minutes to assist us. They do a great job, but these diseases require more personal support. That's how we function for each other.
I haven't noticed any side effects from plaquenil except positive ones- and they started about 3 wks after I began taking it. I, too, am very leary of the effects of prednisone, but I trust my rheumie that her first concern was to get me feeling better- and by that she meant pain-free. She accomplished that for a while. Now I have some criteria for judging whether I am better-or-worse each day.
Diagnosing this stuff early is a great benefit as the medication heads off further complications. heads-off, not prevents nor cures. And I believe that I can be in that 80-90% who don't have major organ involvement. someone has to be. Well, if not me, then hopefully someone I know. :-)
You mentioned hurting above your wrist. That reminded me that I had been having a lot of hip pain and was concerned because lupus as well as some of the meds can cause bone death (necrosis). The doc took my complaint seriously and had it xrayed. I have trocanteric bursitis instead- that's a good thing cause it's just inflammation. Very painful but not dangerous.It was important to me that my doctor respond to my questions about the pain and that she was genuinely concerned that my mobility was being affected. If your doc isn't talking a lot to you, you can try a couple of things, maybe. Like kidding with him (as in "hello" if he doesn't answer) or being direct as in: when you go in have a pen and paper in your hand with a list of questions prepared. DO NOT put down your pen until the questions are answered! :-)
what a night. I was all ready for a great sleep (trying tonight without taking muscle relaxant) then my husband awoke- his moving awakened me, awakened the hip pain, blah blah blah- now I'm awake! boo hiss and my sweetie is back to gently snoring and I can't find my ear plugs. What a hoot! It's okay; I can nap tomorrow all I want. What I had to resist was what I used to do: I'd convince myself that since I was awake and since I was behind on my work, I'd tackle some household job. uhhhh-unnnnnn- no more of that trap!
Well, dear heart, I'd better try to find those ear plugs. I promise I'll try to find the lab-results stuff and post it tomorrow. It really does help if you know what they are looking at. I need to dig it out anyway cause my labs come back on Monday.
go easy girl-
jeri





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