I go to the doc tomorrow so I think I will find out a good amount of information - other than the stuff I can't because I have to wait for test results. Jeez - can I just say that it takes a long time to type a note - need to add Alzheimer's to my list I think or senility
Brian - I'm actually really good on the attitude side. I'm highly motivated by my 9 year old son, which may be cancelled about by soon to be 18 year old who has been digging my grave for the last few months!
They seriously need to devlope a pill to deal with teenagers..or maybe they have and its illegal - .....Anyway, for the most part I'm pretty good on the coping side - I have a good relationship with God, though I wouldn't say I'm a Bible thumper ( no offense to anyone ) - but I find it very helpful to stay grounded. I'm actually very ok talking about dying and that kind of thing which my family is not - but it took awhile and whole lot of tears.
No one knows when their last day is going to be - heck I could get killed in a car accident tomorrow...so best to live each day as if its the last in my book and make sure those that you love know it because many people pass suddenly and are not given the opportunity to have closure or help provide closure with those they love and love them.
Hope this helps - I do think the site is great and am actually shocked at the number of folks responding - its a good feeling to know there are people out there that care and can understand.
Lupus is new to me and it is kicking my butt all over the place...I could probably type a list of at least 20 different 'complaints' of how I can't function or something that interferes with my life...that part is tiring...fatigue and pain are some of the worst for me...but there are many - others due to my other stuff though..
I do wonder what the doc will say about the prednisone - if not that, then what? Something needs to put the Lupus in remission and I'm not that familiar at all with what drugs are used to fight it off -- and stop it from attacking my kidney's?
Honestly, I don't even know if it can move or at the same time attack my heart or other organs? I've been having lots of heart issues this week and am wondering if 'maybe' Lupus has something to do with this? I don't know...
Missy - thanks for the note...very kind of you to reach out....I appreciate it and if there is anything I can do for you just let me know. Since I can't do very much - I do like to help people - when able I'm on the computer alot - not a huge TV watcher so I read alot or LOL look at cars because we need a new one..so I research stuff to death!
Mary - I'm so sorry to hear your in a wheelchair. I was lucky to rehab my way out of that for awhile, but I'll be joining you again soon...I don't like it so much - bought all the cushions for the back and butt and still that thing was so uncomfortable - I hope yours is better -- I needed the lazy boy wheelchair - then we'd be talking!
Do you still work? I can't imagine what that would be like - I haven't worked in about 3-4 years now...spending time with family has been good...doc's in other states - been there too...it is hard and I can't imagine having to do that while working - though they should be understanding for sure...not like your getting any benefit from being ill.
I've heard of the medication you mention - but need to some research. They have tried to give me some med's before for the pain - but its so complicated because of the cocktail I'm on already and it seems many impact the blood pressure which is a huge problem for me.
I did get a magnesium, potassium calcium supplement to counter act prednisone...though honestly i've had 2 bone density tests and I'm fine...did the baseline and then follow up after being on prednisone and no troubles there..
I do have some blood sugar problems - however it runs in my family my aunt and grandfather both died from diabetes - my aunt about 6 month's ago in her 60's and my grandfather 2 years prior in his 70's.
In my mind I picture that the action prednisone has on my body is being very thoroughly used up and that is why I don't have all the complications many do -- because normally I am the king of side effects and paradoxical effects for that matter -- lol, besides the fact that I'm allergic to Florinef - which I cannot live without literally....makes your eyes want to cross I know...LOL
Everyone seems very supportive here and there is much for me to learn. I have alot to read which I look forward too. Thanks for the info on the other folks maybe I will try and contact them.
I have to figure out the PM thing - no idea how it works -- think maybe it goes to my email - not sure.. I don't have any messenger or anything cause I would get virus' and stuff from it -- and I don't allow my teenager on any instant message program so I don't have it installed... I know I'm a parent from the 60's - can't help it....being in IT and then not working I've fixed many teenager's pc's at the request of their parents-- probably who regretted that after I showed them all their messenger conversations or websites they were going too...for me its a good thing because my kids are scared to death to do anything dumb on the pc because they know i can find it -- if you type it i can read it - for that matter the other person too - think it helps keep them in line - some anyway...
Thanks for being so open...and providing some relaxing confidence about posting about all the crummy personal type stuff...guess I won't worry about talking about bowel movement troubles here!
Anyway, I will check into the Neuro stuff - sounds interesting...once this whole heart and bp thing for me get under control I can do more research...just tryiing to stay afloat at the moment...I can completely relate to those that say they can't even get out of the chair....its so me....and though its not great that others are afflicted this way, it is good to not be or feel alone.
Thanks again for all the great feedback. I'm going to the doc armed with some information and we'll see how it goes from there... take care all....