Ouch!!!

One day up and one day down.

Yesterday was great,today stinks.

Yesterday no pain, today ouch!!!

A cold front is going through our fair city and I feel the pain. Unfortunately, I live on the prairie in Kansas, where fronts come through quick and often. There is little warning. I have a friend that keeps a barometer in her home and will look at it and say, "It's coming." I'm not so sure I really want to know that bad.

So, today is not so good. But, I will keep my mind on other things and find small tasks to do around my home. I will not succumb to the pain nor to the disease.

We can dream

I am doing so much better. The steroid treatment is over and I feel back to normal. I'm praying that I am done with this flare.

It had been so long since I had felt this good, that I went out and had my hair cut, went shopping and visited a friend. All normal stuff, but for us chronics it is special.

People who are not suffering with illness have no concept of what it is like to loose those normal things. They go shopping, visit friends, get their hair done without thinking much about it. But, for us, it is a day of planning, praying that we make it through and that there we are not sick and tired from the event the next day. How, I long for those carefree days of old.

If I could just go anywhere at anytime, I would be so happy. To not worry about the outcome of my choices, whether I have my medicine or even if the weather will hold out, would be heavenly. We can dream, can't we.

But, I did go out. And it was wonderful. I love those days when all seems right with the world. I anticipate more of these days and look forward to walking in the woods behind my house in the spring.

My Addiction

While I was hard into the grasp of Lupus, I was put on pain medicine. I was told that it would help the Fibromyalgia. I was in a lot of pain and trusted the Doctors. The problem was, I was put on Oxycontin.

It started, as they say, innocently enough. I took them as prescribed. I really had no idea that I had become addicted to pain medicine.

My behavior began to change. I no longer searched within my self for sin. I no longer stilled my mind to hear the voice of my God. I no longer saw with the eyes of Christ. I no longer saw good in people. I had become a different person, full of suspicion, doubt, fear.

I began to act without thinking. I found myself, one day, with a gun in an abandoned house, thinking about ending my life. I don't know how I got there or why I was thinking this way, except that Satan wanted to kill me. I did, reach out & call someone who talked with me and deescalated the situation.

I saw people as the enemy. I became judgemental of some & proud over others. This behavior finally got me into trouble at my church. No one, exactly, knew what had become of me, but, they did know that I had changed in a negative way. Meetings were called and confrontation of my behavior were addressed. I finally felt overwhelmed with meetings and my inability to defend myself and left my precious church.

I felt so persecuted. Very much into me, me, me. I was lost in my confused mind soaking up my thoughts of victimization. I felt sorry for myself. The deal is, you are suppose to examine ones self. I was not capable at that time of even grasping that there was something wrong with me. Looking inward in the confusion of my chosen drug was impossible. Never have I been so overwhelmed with self.

I lost a bottle of Oxycontin. You can't get refills when you've lost a narcotic. So I was suddenly faced with the truth. The pain started to grow. I saw my doctor and told her that I believed that I was withdrawing and she gave me a week of methadone. This helped that first week, but, I had withdrawals for two weeks.

I laid on my couch for two weeks. The pain was unbearable. I did not receive any medication for the pain. I could not fathom how I was going to live in so much pain. There seemed to be no hope for my future. I had lost my church, lost my dignity, and was facing a life of intolerable pain. But, God is good.

After the two weeks had past, my pain left me. Completely gone. My mind had so longed for the feel good of drugs that it created pain to get its fix. NO PAIN.

The realization of the last few years began to set in. What a mess I had left in my addiction. I needed to repent and clean up my mess. I thought long and hard about repentance before I took the next step.

I wrote to the pastor of the church that I had walked out of and began my walk into forgiveness. I had been on staff at that church when I walked out. I left behind division and hurt people. Through conversations with the pastor it was decided that I would speak at the two Sunday morning services and repent to the church.

Scary? You bet. Humbling? I felt like a worm crawling on the ground. I, really did not want to do it, but, felt it was the right thing to do. Repentance, what a wonderful, positive exercise in the Christian walk. So cleansing and loving to self and others.

I spoke to the church that Sunday morning. Didn't think I had any energy left after the first service. It drained me of everything I had. God was so good to me, I found the energy and was forgiven. God watch me that day and I hope he was pleased. He did, on that day open up new doors for me to walk down. A healing path and a new walk into the unknowing. You see, I not only lost myself in my addiction, I lost God.

God was near me, but, I didn't acknowledge Him. So into ME, that He became less important. My own fleshy needs were far greater than my need for God. But, repentance healed and brought me back to God. He was waiting for Me and I am so glad He is a forgiving God.

Addiction sneaks up on you. It is a tool that Satan uses to steal God's people. Confusion, isolation, despair are the path of the addict. I experienced this dark place and from that my heart breaks over the pain of the addict. I understand their agony, but, I also, understand, that I will never fall back into that dark place. Never will I leave my God again.

Brain Fog

Yesterday, I put a roast in my slow cooker at 11:00 am. At 3:00 pm, I went to check on it. I had not turned it on.

I went into the bedroom to do laundry. I found some books that needed to be put away. Put the books away, then hours later, found the laundry still in the bedroom.

Decided to make lunch for myself and my mother. Got to the kitchen, started putting dishes in the dish washer - didn't notice the roast- finished with the dishes and went back to the living room to sit back down. Never did get lunch.

The brain is not tracking to well. I feel like I can focus. But, apparently I'm fooling myself. It's a good thing I no longer work. It could be a total disaster.
I would staple when I need to paper clip. Leave the copies in the copier and go home for lunch and forget to go back.

I look at all this and have to laugh. It does entertain me. Better to be entertained than to feel depressed by it. I can only rely on my God to see me through and that I do. I assume that He too finds me entertaining and together we laugh.

New Poll

My need to know has taken over me and I have created a poll in the Lupus Support Prayer Room.

Every so often I will ask a question, to satisfy my curiosity and to hopefully create pondering in your, dear readers, mind.

I hope you visit and take part. Who knows, it could be just the thing you need. While there leave me a prayer request. I'm always ready to pray. Just click on the Prayer request to the right and your there.

New genetic mutation halts Lupus

This hopeful news is all over the internet. If you have not heard about it or read about it yet get it here.

Oh man, I'm tired of the cold. Another cold front is coming through and again I'm in pain. Seems like lately, I'm in pain a lot.

I'm again, wrapped up in my heating pad. Please, stop being so cold. I stop the steroids Sunday. I feel a bit better, in the Sjorgrens area, but, I am still a bit swollen in my saliva gland. I can live with that though.

I realize that I need to be more moderate in my life style. To do a little work and then rest. I, usually, work hours and then pay the next day. My new tactic is to work, rest, work,rest. I know, I'm a little slow at figuring that one out. I can be really stubborn when it comes to trying to keep my life as normal as possible. Wanting to be like others, I tend to ignore symptoms and attempt to live my life like they do. Not wise, I know, but, I am finally coming around.

Last night, my community group met here, at my home. I lead the group, so I have to prepare for them to come and then clean up after they leave. Now, that I have been suffering, a bit, this becomes much harder to do. I still have not cleaned up from last night. It can wait. The whole thing wears me out, but, it is what God has called me to do, so, out of obedience I continue. I just need to learn to keep my health in mind and limit or be smart about how much I do.

God is good. He always gives me the strength and encouragement to go on.

My hormone testimony

I have been reading a lot about hormones and Lupus lately. So, I thought I would tell you about my own strange situation with hormones and Lupus.

I was diagnosed at 48 years of age. I was starting the change. Within a year my period had stopped and blood tests confirmed I was now done with having children. I went through another year of agony with the symptoms of Lupus.

After my friends fasted and prayed for me and I went into healing, the blood test showed that I had not gone through menopause. Within a month I was back having periods. How weird is that? I went through menopause and then came back out of it.

The doctor was a bit stumped. He had the medical test in front of him, but found it all to weird. He did say to me, that there is an assumption that hormones play a part in Lupus. I didn't care, I felt great.

So, the next idea was, that since I felt so much better, it would be a good idea to keep me having periods and to not let me go back into menopause. So, I started taking hormones. Whoa, I hated that. My periods were heavy and of course a nuisance. So, I went back off of the hormones. Nothing happened. I stopped having periods, went back through menopause again and had no recurring Lupus symptoms for the next 5 years.

Strange isn't it. Going through menopause once is enough, but twice. Ouch. I don't have to worry any more about going through it again. Last year, I had to have a hysterectomy.

God is good. The hysterectomy came just in time. They did the surgery because my uterus was trying to fall out. But, when they got in there, they found cysts and the beginning of other diseases. Thank you Godm for your intervention.

Alone

Lupus is a lonely disease. You don't always have the look of being sick,so people don't get it. You suffer alone. You fight alone. You survive alone.

My husband is an extraordinary man. He can't feel my pain, but he does identify with me. He grieves when I do and tries to give me strength. But, I am alone. Inside this shell of flesh I am the only one who feels it, looks at it for what it is and I am the one that calls it by name. Lupus.

Lupus is reflected in the way I see the world, in the way I define my relationships and in the way I look at the outcome of my life. I am alone in this disease. It is I who carries it to its completion and it is I who has such intimate knowledge of it characteristics. It is I that curses it and it is I who has to learn how to embrace it.

So alone, with this enemy am I. It takes up my precious time and steals from me. It jumps at every chance to isolate me and discourage me. Sometimes it leaves me alone and teases me with health. But, it always knows that it will be back and again it becomes me and Lupus.

So very alone I stand. Facing the enemy of my life. So lonely in my efforts to endure, so weak from the fight. Sometimes, I can feel it trying to take my life and I alone stand against it. I alone fight the fight of my life, I alone call it by name.

I will endure to the end, fighting alone. Taking encouragement from others but, watching them live a life that I would relish. Knowing that even with their love and embraces, I alone know the intimacy of Lupus.

So, I "fight the good fight". I call upon my God and Father. I lean upon the strength of who He is and know that in the end, He alone is the true weapon of this life and He alone sustains me.

In the end, I am not alone. My God, He strengthens me. So, the truth is, that inside of me, is a crowd. There is my spirit, Lupus and my God. "With God for me, who can be against me." "There is a purpose for everything under heaven." So, even though I feel alone and I struggle with the hardship of life, I will remember that "He will never leave me nor forsake me."

Glitter Graphics & Comments

Power in words

Sometimes, I think it better to not contact nor see the Doctors. I know, that's dumb, but that's the way it feels sometimes.

I'd been symptomatic for several months before I called my Doc about the knot in my neck and the pain associated with it. When he told me it was Sjorgrens, I thought he was probably wrong.

When I get a diagnosis, I usually start with acceptance. The Doctor is right. But, there is the thing in the back of my brain that says, "NO" That's wrong. That is the way it was with the Sjogrens.

He tells me I have Sjogrens, I say ok. Hang up the phone, go to the Internet, look up the symptoms, and decide the Doc is wrong. I don't have dryness at all. Of course, I ignore that dryness can come in degrees and perhaps I have not, really, even noticed. I tend to ignore a lot of symptoms and pain.

So, I start the steroids and within a week my eyes start drying up. At first, I ignored, but then I realized what was happening. Now, my thoughts go to. Doctor said it, now it is happening.

Many Christians believe that what you say comes to pass. That if you say things into the air, there is power there and by saying things out loud you make them come become a reality. Personally, I think this is way out there. If everything I have ever said came to pass, then there would be a lot of dead people in my path.

Ever wish someone was dead? Well, I have. Of course, that was before I was a Christian. But, to believe that my words have absolute power is ridiculous. The power of my words, only, responses to the name of my Lord Jesus Christ. I will not come under the bondage of watching every word I say.

I have a friend who actually will spell the word, instead of saying it. I suppose, he feels that spelling it gives it less power. I, as a person who walks in the spiritual realm, see the power of words. And the power of a word lays behind the meaning, truth and walk of the person saying it. Who do they pray to is a big question. Are the cursing a person?

So, did the Doctor give me Sjogrens by speaking it into the air. No, he is a good and kind man, who was doing the work that Christ put him here to do. Did I take on Sjorgrens because he said I had it. No, not a gift I want, thank you.

Unfortunately, Sjorgrens in with me. A new path in my earthly walk. An unexpected path, but, one I will walk in faith and unquestioning. It is of no ones fault, no one spoke it into the air and made me sick. I am now, symptomatic, because the illness has progressed and the Doctor diagnosed it before the dryness took affect.

God is so good to me. I believe in his power and glory. I know that my path is marked out and with every day that passes He is using me to His glory. Sjogrens is now a part of that journey and I will walk it out knowing that the true power behind what is happening to me lies in the Hand of my maker.

A Good day

My day was soooo much better. I actually, got out of my chair and did house work. It felt great. My pain was minimal and I could work through it. Took a few breaks now and then to not get overly tired. Got everything done I wanted to.

I did start having problems when I went to the grocery. During the walk, around the store, I started feeling pain in my feet and calves. I kept thinking "NO" I'm not going to start again. I'm going to finish what I have started. The pain became intense, I started some focused breathing and focused shopping.

I finished and got all I needed. But, when I got home and rested a bit. The pain and stiffness began to increase. All in all, I did good. I got dinner for my husband and mother. Made snacks for my new cell group and sat down to wait for the evening meeting.

It was my first cell group meeting. Went great and I forgot I hurt. Now, that it is over....I hurt!!!!! My shins, feet and back have had enough. But, God is good. I am not going to complain, it was a good day.

Rejoice over the small things. Rejoice over the blessings, Rejoice because you are wonderfully and perfectly made.

Hopefull article

"Profound immune system discovery opens door to halting destruction of lupus"

came across this article yesterday. I may be slow at finding these things, but I figure I'm not the only one. So, I'm posting the link here, for your reading pleasure.

What a hopeful article.

Help!! I need help from myself

I am sick and tired of being sick and tired. The pain and steroids are getting the best of me.

I've been trying to do house work and can get very little done at a time. I start a cell group, here in my home tomorrow night and I'd like my house to look descent. Yea, right. The thing is, friends have offered to come over to help me clean, but,I don't want them to. I appreciate the offer but, want to do it myself.

Do you think it is pride, or am I being stubborn, or am I afraid that I'm giving up. When I look at all three, I think they all apply. Need to work on that. Take it to God and plead for mercy.

Anyway, my break is up. Back to the house work.

Please, God, give me the energy,

Wonderful Magazine

I have been reading "But You Don't Look Sick" an on line magazine. I really enjoy reading it. IF you have not read it yet, I recommend you give it a try.

Great Article

Wonderful, wonderful article on living with Lupus and the changes the one suffering with Lupus goes true. A great read. Read it here.

Eyes on God

Well, I got through the weekend. Even, thanks to steroids, got to go to church.

I have told quit a few people that the Lupus is back and have had various reactions. Mostly, they say it is an attack from Satan. Does not feel that way to me. I believe it to be a test.

Some ask, what sin am I in. I'm always sinning, but, I have not entered into anything new. I did, start, to ask myself that question. But, decided that I was not going there. I was not going to dwell on looking for a sin in my life. I will, instead, concentrate on the glory of God. To stay in that negative thinking will only hurt me. God will reveal if I need to change something in my life.

I, again, am sad but not devastated. Whatever the reason for this flare or relapse, I will endure and all the while keep my eyes on God.

Sjogren's

I just got a diagnosis of secondary Sjogren's. What to do? My saliva glands are swollen on the right side of my face. I don't have dry mouth, but do have a fair amount of pain.

Doctor is ordering steroids again. Short term, but, I really don't want to go there again.

I'm posting a link that gives information on Sjogren's here. Starting steroids this afternoon, I'm hoping to feel better by Monday.

Warm

The pain of Fibromyalgia has been so extreme for me this winter that I did some research on how the cold affects Fibromyalgia.

Mostly what I was looking for was a remedy. I know cold affects it and I think this year it is so much colder that it is affecting me more.

I found that there is not much help. But,I did find that layers of clothes helps. So, because my left foot is so cold, I put on two pairs of socks. That helped for one day. Then, on top of the extra sock, I now have my foot wrapped in a heating pad. SUCCESS!!

Foot is now warm.

The extra layers of clothes help a bit, but not as much as I would like. So....last year I bought my husband a massage cushion to sit on. Turns out, it also, warms up. Now, I'm sitting on the warm cushion.

So, here I sit. My foot in two pairs of socks, wrapped up in a heating pad. My butt, on a heated cushion, layers of clothes on and a blanket across my lap. Do I feel better?

I certainly feel warm.