Lupus stinks

Well today I thought I would share a little bit about the way Lupus is affecting me now, in hopes of encouraging other Lupies. As I said before I am a survivor of SLE, Lupus. I live with it everyday and it and its little buddies that sometime come with it, have disabled me. I have days where I can not awake due to horrible exhaustion, some days I may have more alert time, but every day I live with horrible pain of different sorts and can now function with the help of daily pain management with the use of a "breakthrough" pain killer if needed. I can drive and function with that , but while on predisone I have to take a tranquiler to offset the effects of the steroid. Catch 22, anyway when I take that medicine I cannot drive or use machinery etc. Weird I know! Function great with pain meds but not a simple medicine that millions of people use. I have learned that my system and body are far from normal. LOL Sleep does not come at the normal times either and bugs my beautiful husband. I have been doing well on the predisone , thank you Lord! and saw my doctor(rheumy) on Tues and he was so pleased with the way things are going. I mean I can walk now without any humped over or bend over. I spent 2 yrs in a wheelchair because I could not stand etc and the pain was unbearable, but now doing so much better. The dr. was so excited over my excitement on the creative front and starting this blog. I am finally learning a bit, after 10 1/2 yrs, to monitor my activity, not to use my energy all at once, noticing signs of body when it is saying "uncle" enough activity for now. Well got a blow yesterday as the tests that I take every 3 months or more often if needed showed a possible problem with my kidneys. We went thru this about 1 -1/2 ago and all was fine with further testing. I am fortunate that my kidney specialist (nephrologist) is very good, patient and kind. I just can't afford to go to another doctor right now. I am trying to pay off doctors I already owe.
I am blessed to have medicare but I do not have supplemental insurance as they went up $1,000. yes 1k a month and we could not do that, so now I am uninsurable. We are responsible for the 20% and anything that is not covered. Believe me there are a lot of treatments and medicines etc that medicare does not cover. Physical therapy is a thing of the past for me because we can not afford that either. This blow of the kidney thing really hit me hard, especially at the time we are going thru, like most of the country, financial problems. Everyday something new. You all know what I mean, right? Well anyway I was just being still for a moment earlier today, and The Lord reminded me that He is with me and He will work everything out for His good and His glory. That is all I really want, to honor God. I know sometimes that is very hard to do. But please remember my friends, that He does walk with those who know Him all the way. We are not alone, we may not like our situation, but we are being proofed and proven as in the silver refiner's fire, it makes us kinder, more compassionate and stronger people to get through these trials and tribulations. Just hang on to the Hope and promises that God has given you in His word.
If I can help anyone get through a difficult time then going thru my suffering is very much worth it to me. And I am able to count it as a joy, and rejoice!
So I leave you my friends today and asking you that if I can help any of you in way of prayer, encouragement, being a sounding board, listening or talking to you , please let me know. I hope you all are encouraged and feeling blessed. I know I am.
Peaceful musings,
Deanna