LIFE --1 Hour At A Time!

I thought my loving Heavenly Father had finally rewarded me, like He rewarded Job after Job losing everything and suffering so much. I thought I was going to get the chance to be functional again, and feel alive and experience joy again, but it didn't last long. I am thankful for the memory of how life felt during that time, though.

I had to stop taking the D-ribose. It appears that it is so good for you, that it even strengthens your immune system. Well for a person with lupus, that can be fatal, because already our immune system is too strong, and the fighter cells attack our bodies and organs as if they are germs or foreign objects in our body. We can't even spend time in the sun, because the sun also strengthens your immune system, making lupus worse. I got so sick that for a few days I wasn't able to roll over in bed to reply to my emails, but I could read them, and was too weak to talk, or to hold up a book to read. I had a seizure, and another time, I think I got very close to death again, because I saw some of the things that I have seen during other near death experiences. I saw some wonderful things, but things that I have no words for, so I don't know how to explain it to people. I am still spending a lot of time thinking about those images and
trying to think of how to describe them.

There is a medicine used for lupus, (cortisone) and it's very strong and has such terrible side affects that I always said I would rather die of lupus than die of the side affects of that medicine. I have only been desperate enough to try it about 3 times in my life. I prayed for guidance about how to get feeling better. Obviously it's not my time to die, and I could not just lay there helpless forever. The impression I got was to take that medicine. I didn't want to do it. I called Mom upstairs and asked her advice. She has that medicine because she also has lupus. It suppresses the immune system so the fighter cells in your blood stop attacking you, and helps with any swelling or inflammation in the body. I spent days passing out and trying to do this US gov't proofreading project during the moments I was awake. I had pancreatitis, inflammation of the pancreas, and it has many nasty symptoms. The worst was that I kept passing out from my blood sugar going too high or too low because my pancreas was out of control. Mom said that the side affects of that medicine only come with large doses and long term use, but when I talked to my Dr. , she talked about large doses like 10 pills a day, or even put me in the hospital with cortisone IV, but said she didn't trust this hospital much, we are not even checked on often enough during the day while in this hospital. I didn't want the side affects from doing that, so I took a few pills and cut them into 4, and during the day would take one tiny piece of the pill, with a bite of food so I wouldn't get sicker. This is the third day of doing that, and finally many symptoms have lessened, I feel strong enough to type again, but not strong enough to get in the shower yet. So I am thankful now for this strong medicine with horrible side affects, in small doses, BUT...


I am wondering

I accepted that healing! I thanked the Lord SO many times a day for it. I told others about my healing and my miracle and they also praised the Lord about it! I was convinced I had been given another chance at life, to have enough strength to enjoy life or to function a bit more than I do.


I know I will learn in time the reason why God took my healing away....but until I learn that, my feelings are hurt like a child whose parents did something that hurt the child, but was for the child's own good. I feel a bit betrayed and confused by the one who I love the most...my Heavenly Father.


I am so frustrated, I use my made-up word "FRUSTIPATED!!"---beyond frustration! So frustrated, that I am not able to accomplish anything else until this problem clears itself up. I have so much that needs doing urgently, and can't even find anyone to hire to help. I can't have anyone come live with me when I am in this condition, so I get upset thinking about my husband coming home. I can't bear the thought of making life hard or even miserable for him.


Interesting that the worst of my illness happened the day that I finished all the legal paperwork to go to court to get my husband here, 5 years of work, 1800 pages done in the last 5 days of work.

OH MY STARS!! I just noticed something!! I have had this picture as stationary for years, but the stationary had this as small pictures down the left side of the paper. I thought of putting it here because it reminds me of how I feel, looking out the window, trying to figure out "WHY??" Now I see this picture in a whole new light. I have never seen the wolf outside the window. Did you know "lupus" means WOLF? She is not looking out the window, she is turned away from the wolf, from the lupus. The dove in the corner, the symbol of the Holy Spirit, is watching over the lady! The wolf is standing in water, and that water is flowing into the window, and the woman's feet are in the water, so the effects of the wolf (the lupus) is affecting the woman. The light above the woman's head, I wonder what it's symbolism is. Light...spirit? knowledge? God? Any ideas from you, my friends? What do you think that light could symbolize in the picture and in how it could relate to me and the wolf (lupus) and my sitting by the window thinking? Any other symbols you would comment on? The moon, the fact the lady is wearing all white? The water? Whatever it is in the lower 1/4 left side of the picture? Maybe your insight will give me some insight.


Love you all---u r pieces of my life and heart.


















Support Our Troops

Living--4 hours at a time. I hope the title caught your attention! Read a bit farther!

A blog! It seems so big...so...public...so profound...speaking of profound, I am profoundly private, so I am surprised that I have been thinking of a blog for a few weeks instead of just writing privately in a journal.

3 weeks ago I was told that I might not live through the year, so I thought I should share my journey with others, in hopes that I can say something to help someone else. Everyone wants to think that they have done some good in the world, or in someone else's world, before they move on to the next birth, that we call death. I have about 4 hours of strength a day, hence, trying to live a life 4 hours at a time. Last week I only had 10 seconds to be up and around before I would almost collapse. This week I have oxygen, so I can be up for 5 minutes at a time, which is a big difference. I can do a lot, if I do it 5 minutes, then rest, over and over.

I would have started weeks ago, but I had no clue how blogs worked, or where to open an account. My posts will look out of order, because I was trying to get all my posts in order that I had sent to people and they had sent back to me since I started sharing that I might not live, but I have very little strength, so that was taking too long.

Most of my blogs will be letters that I sent to friends, and the touching replies I get back. I am doing it this way because in those letters I share what's going on in my day and how I feel, and I don't have the time to write it out twice.

Some of my blogs will be articles I wrote just for the blog, things I won't tell those close to me in case it would upset them. I also have 150 published magazine articls, so I will put the best of those too.

To be continued. I am out of energy for today. See you tomorrow, my little blog!