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A Letter to My Readers
2008-05-08 13:59:00
My Dear Readers ,The truth is I feel dried up. I have not got back into the swing of things and feel that I am lacking in my blogging.I am trying to plug back into my church activities, housework, crocheting, blogging, but am having a great deal of trouble doing so. My concentration is gone and I have very little motivation.A dear friend came by and told me that it is the Jewish tradition to mourn for a year and that it took that long with her mother. I, on the other hand, feel that it is time to get on with the task. That is what my pastor has told me and I agree. The problem is my mind and body are not quit ready. I need to give myself permission to take as long as it will to grieve.Tonight I am going to go ahead and have my community group hear at my home. I was suppose to call everyone, that comes, and tell them it would occur. But, I have not called. Two are coming and that is only because they called or I saw them. I do not want to do anything.So, I am trying to push myself bac...
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Money, Money, Money
2008-05-06 22:09:00
Every since my mother passed, I have woke up with a headache. I suppose it is tension, there was so much to do. It seems like there is no end to all the details.My mother thought that she had the whole funeral paid for, but....NO. Seven hundred fifty dollars to put her in the ground and now I find out that not all of the grave stone was paid for...another three and seventy five dollars. OUCH!!!Such a long draw out ordeal. Hard to find time to grieve. A friend told me, the other day, that it would take a year to finish grieving. No wander...no one will let you have time to grieve. Everything is about money. I was out at the cemetery yesterday and found several graves without tombstones. Now I know why...NO MONEY!!! How irritating.My mother wanted us to be able to relax and grieve. Poor thing had no idea how the world will not allow grief only financial gain.
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Gone
2008-04-30 13:50:00
I don't know what to write. I really don't. I wait on God to tell me what I should write and I hear nothing. I can only reflect.The last 12 days have been long and a blur. I have seen God move in so many ways that I can only sit in awe of the beauty of His glory. I have had ordained appointments, seen into the spirit realm and cried till my eyes became raw.I waited for the spirit of death and he arrived last night at 10 till 7. My mother is gone. Gone from us, but now with the Father. She cried at that moment of death and I rose up from my sit, bent over her and spoke truth to her. She heard me, my brother kissed her and she left. Oh, how we wept.Throughout the day people had come and gone in her room. So, many prayed and so many songs were sang over her. The song, still resonate in my heart. My friends came and loved on my mother as if she were their own. They are, my friends, beautiful people of God. Giving of themselves in that hour and showing the love of God. ...

Mother
2008-04-24 14:22:00
My mother has been very ill. She is passing on. It is a slow process and I and my brother, Only in His Service, have been spending everyday in the hospital trying to get her to eat.It is exhausting and difficult to watch. My heart is heavy and sadness radiates my entire being.
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Can't Stand Myself
2008-04-18 15:34:00
I continue to do well. The vitamin D is a 5,000 mg dose. I'm having some side affects. Stomach problems, loose bowel and, I believe, I STINK.Yes, I smell myself. Others say, they don't smell me. I DO!!!!Taking showers, covering myself in lotion....nothing helps.I'm hoping this gets better. I have to take these pills, once a week for two months. I can't stand myself.What to do?
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Joy!!!
2008-04-11 14:15:00
My joy is overwhelming.I got my blood work back yesterday and am amazed. I am not in a flare. As a matter of fact, my lupus markers are still suppressed. Thank you God.All these symptoms are from a vitamin D deficiency. All the symptoms. Is that remarkable. The symptoms mimicked Lupus.I can not thank God enough. Truly, His healing five years ago continues. Even when I wavered and fell under the delusion that the Lupus was back, God was faithful and kept me safe from myself.Thank you God.There is no one like our God. His faithfulness endures forever.

Fear
2008-04-10 14:15:00
Do you fear Lupus? My child, "I have not given you a spirit of fear".I have never gone into fear over my diagnosis. It,Lupus, will not break my spirit,nor define my life. It is but a "thorn in my side". I will remember my vulnerability, because of it, but will not succumb to its rules.I will live above the nature of Lupus and live, only with the Word of God. That is what defines me for the Word says, I am "Wonderfully and perfectly made". This is the truth and it is what I live by.Some would say, "How foolish". "You live in a dream and ignore the reality." My answer is that this place is just a stop over to eternity and my lot here is "Nothin but a thing." I will live above Lupus and glorify the Lord. Lupus will not distract me, nor take me from my purpose on this earth. Through it, Lupus, God has spoke to many, so things are not as they appear. "In all things, I will glorify the Lord."So, when you are flaring or taking another test. Sing to the Lord, He is your comfort...
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Free from the Grip of Death
2008-04-09 04:59:00
It has been a week since I saw the doctor and I still have not heard a word from him. No news on my test results. I suppose that is good, but I am curious.I feel wonderful though. Last Thursday, I got prayer from my small group and feel I was delivered from a spirit of death. I believe that I had just decided I was going to die and was just going to succumb to it.The prayer was amazing and full of love. My deliverance complete. My spirit is so much lighter and my body feel light and painless. I am very happy.
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Apple Cider Vinegar
2008-04-02 17:01:00
I went to the doctor today. Weird!!! The decision on new medications was put off. They took six vials of blood to see where I am at, because I have seen some improvement over the last week and the reason is soooo weird.Apple cider vinegar. YEP!!! That is what I said. Apple cider vinegar.My husband has serious sinus problems and I read where apple cider vinegar would help. So, I started him on a drink made up of the vinegar, honey and Stevia. He hated the taste so bad, that I drank it with him. You know, like showing your children that the medicine is not so bad. Well, I found that the swelling in my mouth went down to nearly nothing, my reaction to chemicals stopped and I had more energy. Is that weird.Well, I am grateful. I still do not know what the blood nor urine will show, but the doctor said that Vinegar is an anti-inflammatory as well as the Noni that I have been taking and to keep it up. We will see about the blood test.I thank God for His hand on nature. I us...

I Don't Want To
2008-03-26 12:16:00
Ok, so this is how it goes.I have a place where the inside of your cheek meets the bottom of your mouth that keeps swelling up. On the other side of my mouth, the saliva gland will, now and then, will swell up, the size of a marble. Real uncomfortable. My skin has decided to react to soaps, conditioners etc.. By giving me the feeling that I am on fire. Again, real uncomfortable. I am getting welts on my skin, especially on my face, that, at times, turn into little scabs. For the finale, my ankle began to hurt the other day and both feet swelled. The pain became so intense that I could no longer walk. Better now though. Does not sound good.I have not seen the doctor, but do go next week, for my regular three months check up. I have purposely not called him, because,...well...I don't want to know. The truth laid bear "I really, don't want to hear the truth." I do not want to go back on a huge regime of pills again, steroid nor chemotherapy. The help for Lupus can seem, ...

Last Week
2008-03-22 09:59:00
I have been away from my blog a little longer than I would have like to have been. My mother feel and broke her hip and it has been terrible.She is now in a nursing home. Putting her there was very hard, but she is doing well.During all this, the Lupus has really acted up. My legs swell and my ankle hurts so bad that one day I had to use a wheel chair. Then for a couple of days a cane.Yesterday, I had less swelling and could walk on my ankle all day. I, probably, need to go to the doctor to see if my kidney is compromised. I could not find the time last week, but will go this coming week.I feel so in over load. To many decisions and to many problems. In a twinkling of an eye, my life just turned upside down. I am probably have more trouble because I am so stressed. Very hard to not be stressed with all that has been going on,I continue to hear my mother in my home and try to remember her needs. But, she is gone and will probably not return to my home. It is so very sad.F...
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The Fight
2008-03-14 13:51:00
I feel really energized today. I thank God for that. He fills me with life.I read a blog today, that was about the fact that, you never know when fatigue will hit you. This is true. You can be going along, with your day, and then, all of the sudden, exhaustion. I have not suffered with this in a long time. The more I minister, keeping my eyes on God, the less likely I am to experience these kinds of affects. I am grateful to God that his glory shine on me.But, then you have the other symptoms. Again, my way of fighting such things, is to rebuke the attack of the evil one, and claim victory. Do I get tired of the fight? You bet. Do I at times falter in my fight. Oh, yes. But, I always come back to face the enemy and take my life back. Today, if I look into the mirror, I see welts on my face. But, if I look beyond the mirror and into the face of God. I see a person that is "fearfully and perfectly made."
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Wish I felt better. But, Oh Well
2008-03-11 13:09:00
I wish I could say "I fell better", but that would be a lie.It would seem with Lupus, you never know what is around the next corner.Always a surprise. I, now, have been getting bumps, not a rash, on my face and arms. They kind of look like hives, but do not itch very much. The day after I get them, the bumps have a small scab on them. I have no idea what this is about.My pain, except for my ribs, is horrible, at times and the stiffness is awful. Brain fog has become all to familiar and my spiral into the depths of sickness seems unstoppable.But, I find comfort in my Lord and have constant communion with Him. He is my strong tower.My ministry to others has pick up and this helps me to keep my mind off of the Lupus. Helps me to not be defined by the disease. I am a child of God, not a body who goes by Lupus. I am wonderfully and perfectly made.I have been busy crocheting. Love to crochet. Such fun. Here is my latest project.Pretty happy about the way it turned out.There se...
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crochet & Noni
2008-03-05 13:45:00
Well, Praise God for natural remedies.I forgot to take the Noni yesterday and found out it truly does work. By midday my pain was back. I realized that I had not taken the Noni and am now back on it and the pain is again gone.I continue to do pretty well. Can't say that this thing has me down. My ministry is growing and I keep my eyes on God, not on Lupus.My daughter and I have started a new business. We are starting out in my home, to try and build a clientele and then, hopefully open a store front. We make everything we sell from scratch.My daughter is a homesteader. She is making breads, pastries, noodles,etc. and I crochet. I make anything. Right now, I have purses, baskets, shawls and a few other items. Below are some pictures of our first day we opened. We did pretty good. We only had nine customers, but we both sold over fifty dollars worth of goods and both got orders. It is very exciting. Crochet ing is something I can do and still be disabled. It does not tak...

Noni
2008-02-26 12:51:00
The Noni worked incredibly well on my chest pain. I just take a tablespoon in the morning and one at night. In two days my pain was gone.I am not going to go off of it to prove that it is the Noni that has caused my relief. That is what my husband has purposed. I am just believing that God had me find the information on Noni and it works.The Noni does not take away all my pain, but I do believe that it has taken away a lot of the swelling in my ligaments so the pain is reduce. Well, in my chest it is gone. I did notice that if I am late in taking the Noni, I begin to feel a bit of tightening in my chest. Maybe, that is prof enough for my husband.I suggest you give it a try if you have pain. I got mine at Walmart and it is not expensive.So, I thank God for His wisdom and grace in leading me to Noni. Praise you Father.

Just one more Thing
2008-02-20 13:39:00
I have a diagnosis. Costochondritis. What??? Oh, yea!!! Isn't that a fun name. If you want to learn more or understand this one, here is a link.The pain is horrible. Sometimes, it is so extreme, that I can't walk. When I take a step it just drives the pain through my body.I have started a herbal substance for pain relief. It is called Noni. I hope it works, because the pain medication has stopped working and if I go for stronger medicine, I will not be able to function at all. Although, sleep is good, when you hurt this bad.God is so good, all this is drawing me closer to Him. I can only depend on Him to provide for me. To sustain me, to deliver me, to heal me. I have a great God, who I can call upon, at anytime, and He will comfort me.Thank you God.
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Still Waiting
2008-02-18 14:51:00
Saw the Doctor on Friday. But, no news. Did another ekg and then ex-rays. Hopefully, I will find out, something, today.Turns out, that when I went to the hospital, they gave me a pain mediciene, that is the strongest pain medicine know to man. It certainly worked. But, only for a short time. Now they have me on Percecet. I sleep a lot and am no good as posting.I am copying some of what I wrote today on my other blog, because, I am way to droggy to spell or think right. I hope what I wrote shows some of where I am at right now.If this does not make a lot of sense, it is because I am still on some heavy pain medicine. First, thank all of you for your response to my last post. I was over joyed with the love that poured out from my brother and sisters. Many even came over from my daughters blog, A Homesteading Neophyte, to encourage me. I am so grateful. I saw my doctor on Friday and still do not know anything. She just put me on stronger pain medicine. So, I sleep a lot. ...
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Hospital Visit
2008-02-15 14:01:00
Last night, I had to go to the emergency room with chest pain. I hate it that with Lupus, so much of the time, they can not find any reason for your pain.At least, my heart was not involved.I have to see my doctor today for follow-up, because, if the pain is front fluid around the heart, it was to soon to show up on the ex-ray.What I believe it is, is swollen ligaments and tendons in my rib cage. My pain is horrible. Truly need relief. Any ideas out there?
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My Inner Ear
2008-02-14 12:50:00
Last night, before I went to bed, I noticed I had a bright red spot on my face. I have not seen one of those for several years. I felt pretty disappointed and it is still there this morning. But, I will be extremely happy, if this thing on my face, does not get any bigger or spread.I am having some trouble with my inner ear. I have autoimmune inner ear disease. It came about from the Lupus. The Lupus attack the mechanism in my ear that keeps the fluid, in my ear level. This causes me to be dizzy. Very dizzy. But, for the last few years, I have not had any trouble.Now, it would seem, it is back. I will be just sitting around, minding my own business, when suddenly the room will take off. It will spin violently. Or I may feel like I am floating. This all can, also, cause me to be confused.Back then, I was sent to see a vertigo specialist. He put me on a low dose water pill, which, after a while, helped. I suppose, I need to go and see him again. But, going back to see ...

A Question of Ethics
2008-02-09 12:55:00
This article that I'm posting is about a breakthrough in research into mitochondrial DNA research. They may have found a way to manipulate DNA by using 3 embryo from three different parents. This manipulation could lead to a cure for autoimmune disease.I read the article and was a bit uneasy. I questioned myself. Is this manipulation ethically wrong? Are we messing where we should not be? Are we playing with life? Would I take a drug designed from the embryo's of three different parents?My answer to the last question was. "Yes". Then why ask the first set of questions?Click here for the article.
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Cold Feet
2008-02-06 13:22:00
Always concerned about my cold foot, I found this article "The Chill Factor" that talks about Raynaud's Disease. It is a good read.I did, however, I believe, figure mine out. A talk with my doctor eased my mine. It appears to be a nerve problem. I was in fear it was my heart.
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Caretaking
2008-02-05 06:37:00
I am still going up and down. Went to church Sunday feeling great, but by midday pain had set in and I broke down and took pain medication.My mother lives with me. She has Alzheimer?s and is in the middle stage. It is such a struggle, at times. Well, a lot of the time. My mother is a very self centered woman and that has not stopped with the onset of Alzheimer?s. She has become quite demanding.Right now, she has a swollen wrist and hand. I enlisted my daughter to help me and we took her to the doctor today. No broken bones, just incredibly swollen. She is suppose to just rest the hand and wait to see if it gets better. The outcome of this trip to the doctor was, she has become more helpless.The thing is, when she thinks you are not looking, she is not in the least bit helpless. Then the problem is with me. There are times when I just don't have the energy to cater to her. She said to me the other day, "I know you hurt, but I need you go to the kitchen and get me food."...

Ouch!!!
2008-01-29 12:52:00
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.
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We can dream
2008-01-28 15:32:00
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 wor...
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My Addiction
2008-01-24 12:24:00
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 be...
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Brain Fog
2008-01-22 14:33:00
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 th...
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New Poll
2008-01-20 23:56:00
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.
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New genetic mutation halts Lupus
2008-01-20 13:05:00
This hopeful news is all over the internet. If you have not heard about it or read about it yet get it here.
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My hormone testimony
2008-01-17 14:04:00
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 ...
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Alone
2008-01-15 15:27:00
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, ...