Monday, August 9, 2004
Its Morning
Sunday, August 8, 2004
he Inflammatory Process and Autoimmunity
That's me and my Mom!
The Inflammatory Process and Autoimmunity
The normal inflammatory response process is a byproduct of our body's immune system. Which fights infection and heals wounds and injuries. When an injury or an infection occurs, white blood cells are mobilized to rid the body of any foreign proteins, such as a virus. The masses of blood cells that gather at the injured or infected site produce cell to repair wounds, clot the blood, and fight any infective agents. In the process the surrounding area becomes inflamed and some healthy tissue is injured. Under normal conditions, the immune system has other factors that control and limit this inflammatory process.
Blood tests reveal that SLE patients are more likely to have been exposed to certain viruses than the general population, but experts have not been able to identify any specific virus as the primary suspect.
Among the viruses that provokes some interest are the Epstein-Barr virus (the cause of mononucleosis), cytomegalovirus, and parvovirus-B1. These viruses are very common, however, and in any case, it is unlikely that viruses are the sole cause of SLE, since immune system defects vary widely from patient to patient.
Some research suggests that different viruses may imprint specific types of SLE. For instance cytomegalovirus may affect blood vessels and cause problems such as Raynaud's phenomenon or blood abnormalities, but may not affect the kidney as much.
Sunlight. Ultraviolet (UV) rays found in sunlight are important SLE triggers. When they bombard the skin, they can alter the structure of DNA in cells below the surface. The immune system may perceive these altered skin cells as foreign and trigger an autoimmune response against them.
Drug-Induced Lupus. Some people develop lupus symptoms after taking certain prescription drugs. So far about 40 drugs in current use have been linked with the onset of lupus. Drug induced lupus is eliminated after stopping the medications.
Yup, this is getting a bit complicated me thinks. But, Lupus is a very complicated illness. Just think how hard it is to diagnoses it. How hard it must be to treat it. Yet, how hard it must be for a person to live their life with it. If it is hard for medical experts to figure out how to get a handle on this illness. An illness that has been around for hundreds of years. Can you imagine how hard it must be for us to deal with these medical professionals? For years many people have been going to doctors only to be sent away being told that their symptoms are only in their head. Some only to be suffering terribly. Experiencing paralizing fatigue. Horrible pain. And, even worse.....when it becomes too late to do anything about it... organ involvement. I had to have two strokes for anyone to really take me seriously. Then all of a sudden doctors were listening to me. Why, all because I didn't have a positive ANA. After all without a positive ANA I couldn't possibly have Lupus. Here is a good article that explains how Non Positive ANA Lupus can exist. Ask the Expert- Does ANA-negative lupus exist? It didn't matter that I had 7 out of the 11 diagnostic criteria and a positve antiphisiploid antibody. Oh now they take me seriously. And, I am thankful. But what about all the others out there who are still suffering? Believe me I wasn't looking to have Lupus. I was just looking to stop hurting. I was just looking to be treated. I just wanted to be fixed. I just wanted to stop being sick all the time. I know that I still feel that way all the time. But, now I know that the doctors can treat me. There are things that they can do to make me feel better sometimes.
Again, I remain....
Lu The Lupus Lady
Saturday, August 7, 2004
LESSONS ON LUPUS AND ITS COUSIN DISORDERS
Unless something strikes my fancy I think I am going to dedicte the next couple of entries in my journal to Lupus education. Pretty much I am going to just try to read from some sites and put those words into easy undertandable terms that everyone can understand. So here it goes.
Tonight's lesson is basically an explanation of what the heck Lupus is. We are going to start calling Lupus Systemis lupus erythematosus or SLE.
Systemic lupus erythematosus SLE is a chronic, often life-long, autoimmune disease that ranges from mild to severe and afflicts mostly women. Systemic lupus erythematosus SLE can affect any part of the body but it it pretty often hits the skin, joints, blood, and kidneys (or if you are like me the central nervous sysem). The name of the disease explains it all. Systemic is used because the disease can affect any and all of the organs and tissue throughout the body.
Lupus is Latin for wolf. It refers to the rash that extends across the bridge of the nose and upper cheekbones and was thought to resemble a wolf bite.
Erythematosus is from the Greek word for red and refers to the color of the rash.
The primary characteristics of the disease are the following:
- Fatigue.
- Joint pain
- Recurrent injuries in the vessels that run through our body.
So what the heck causes this thing? SLE is a intricate disorder that occurs as a aftermath of a number of independent processes and factors, most likely the following:
- In the same basic premise whereby we send out antibodies to attack bad cells in our body (i.e., when we get a cold) in SLE these antiboides are out of control, thebodies thinks it has the flu most of the time..
- Lupus may run in families.
- Environmental factors, such as viruses or sunlight, that aattack the body's cells or bring on other changes that are necessary to trigger a flare
- is a vexing disease because the first symptoms most likely appear years after the initial event that triggers the disease process. And since there are many immune abnormalities in lupus, tracking down the original cause is very difficult.
For those of us that are Lupies we already know all of this. I am trying to find ways for our family and friends to understand Lupus better. Tomorrow........The Inflammatory Process and Autoimmunity ............ Just what you were waiting for. And, they said I didn't have anything interesting to contribute to life. Now look at me I'm.....
Lu The Lupus Lady
Daily Meds or The Heavens Declare the Glory of God
I am getting ready to take my medications. Well, the morning ones anyway. All 11 of them this morning. Well, I usually don't have 11 every morning. But, since I have Bronchitis now I have 3 new ones. I suspect that I will be staying on the inhaler for a while. Right now on the meds I am getting ready to take and a little bit about them. Now mind you these are in no order of importance. Just however they pop into my mind. Remember my mind is an abyss lately and I may have to run back and forth to the kitchen for spelling and stuff like that. LOL Okay here goes..... Oh... Oh there are the two seizure meds.....Topomax and Trileptal. They are working just great. NOT My seizure activity comes and goes. Mostly it comes when I am stressed or upset over something. Lately its been more so when I get confused over things. And that is a lot now. Which brings us to the Namedia. Its a med that is used to treat mild to severe Alzheimer's disease. I'm being given this because I have Cerebral Vasculitis. I have that because of the Antiphisiploid Syndrome. Basically my brain is inflammed. For which I also take CellCept. Its an immuno suppressant. A chemo drug. A mild dose of it, yes. But I still get a lot of the side effects of chemo meds. Althugh not as severe as IV chemo. I feel wiped out often. My hair is thinning. Next I take Prednisone. (Only for a few days ~ thankfully!) Prednisone relieves inflammation (swelling, heat, redness, and pain) and is used to treat certain forms of arthritis; skin, blood, kidney, eye, thyroid, and intestinal disorders); severe allergies; and asthma. Prednisone is a good guy, yup. It makes you feel like you have a false sense of euphoria. A false sense of energy. But, its a bad guy too. It makes you put on weight, makes you break out. Okay you say. Little stuff to put up with if its going to help me. But long term use of Prednisone weakens the bones. It causes Osteoporosis which is not a good thing. There is a strong correlation between Prednisone use and the need for major joint replacement surgery. Not for me, I think. Prozac and Xanax...... Do I need to say more about why I need to takethese two medications. There is only so much I can do to hold it together myself. Zithromax, the antibiotic I'm currently on for this Bronchitis. I'm usually on some kind of antibiotic either for a kidney infection or a bladder infection. Celebrex... I just take it twice a day to help relieve pain. When the pain gets really bad I must bring in the big guns. (Darvon, Tylenol 4 with codene or Percocette... but first I always try the Celebrex 400 mg first I hate the narcotic head feeling thing and of course the Fiorional for when my head just won't stop aching and the Cerebral Vasculitis is causing things to swell in there). And, last but not least I have Prevacid which helps my belly handle all these meds. It also help with the GI vasculitis that the Lupus has caused. I must confess that I just put all the meds in the palm of my hand and throw them in the back of my mouth and wash them down with my coffee. I also take 2 puffs of my Combivent. But, shush.. don't tell my doctors. If I had to sit there and follow all the instructions I would be sitting at the kitchen table for hours and then it would be time for my night time meds. Of which there are just about the same except we add the Coumadin. Its a blood thinner. I take it to make my blood thinner (hence the blood thinner name). The antiphisiploid antibody in my blood just makes my blood throw clots. At night I also take Folic Acid because I am at risk of heart disease again because of the antiphisiploid syndrome. Also I take a cholesterol lowering medicine called Crestor because my bad cholesterol is very very high. My good cholesterol is very very low. My body just makes it. With all these meds I am not counting my vitamins and the supplements my doctors have told me to take. Such as the cranberry pills my urologist advised me to take or the Vitamin E pills or the DHEA pills my endocrinologist and GYN advised me to take. Or the psyllium husks I add to my orange juice my gastro doctor advised me to take to clean out my colon to help my IBS. Again, I'm not complaining.... It's just a statement of facts. )Thank you Loretta, I just love those words.) This is what its like living with a chronic disease. I'm proactive as far as my care is concerned. I'm very fortunante that I have loved ones who recognize my symptoms and act quickly when things are not right and they help me do the daily stuff around here because I am just not capable of doing it anymore. But, most of all I feel loved. I don't feel like my illness is a burden or a curse. First of all things could be a lot worse. I am able to open my eyes every day and see the wonders around me. Also, I can close my eyes at night and know I have lived a beautiful day.
I remember Job and what he said to God after God spoke to him... Job said..... "I know that you can do all things; no plan of yours can be thwarted. You asked, 'Who is this that obscures my counsel without knowledge? Surely I spoke of things I did not understand, things too wonderful for me to know. "You said, 'Listen now, and I will speak; I will question you, and you shall answer me. My ears had heard of you but now my eyes have seen you. Therefore I despise myself and repent in dust and ashes."
Job was faced with tremendous turmoil. He knew in his heart that God hadn't forsaken him but others were trying to convince him that God had. I need to remember this. My faith has always been strong. Now I need to do as Job had done. I need to not only have my ears hear of God but have my eyes see him as well. There is too much going on in my life ..... way too much for me to be able to deal with alone. And, as much as I enjoy speaking to my family and friends. And, I will always continue to do so. Because I love them so very dearly. I need to get myself back to church. Even if I sit quietly in the back. I need to be like Job to see God with my own eyes. And, that my friends is what's called BEING FAITHFUL.
The heavens declare the glory of God; and the firmament sheweth his handywork. Day unto day uttereth speech, and night unto night sheweth knowledge.There is no speech nor language, where their voice is not heard. Their line is gone out through all the earth, and their words to the end of the world. In them hath he set a tabernacle for the sun, which is as a bridegroom coming out of his chamber, and rejoiceth as a strong man to run a race. Psalm 19: 1-5
Thank you Karyl
Tuesday, August 3, 2004
BUT YOU DON'T LOOK SICK
Here is an exerpt from a wonderful explanation on how lupus drains our energy. To read the story in it's entirety please go to
“quote from story here”
- The Spoon Theory
By: Christine Miserandino
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to havesomeone or something else, in this case Lupus, being in control. Here is an exerpt........
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to getmore, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badlythat it took you 2 hours to do all this.
In her story Christine goes on to say...
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
What really got me was when Christine said......
Its hard, the hardest thing I ever had to learn is to slow down and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".
Christine's Spoon Theory is amazing and there is no one who has Lupus who does not use this spoon analogy.
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".
This was not written by me but was found on the internet.The story is called "The Spoon Theory and was written by Christine Miserandino for the entire test please go to www.butyoudontlooksick.com. I believe that it exactly explains how I (and how all of us who have Lupus) feel during a flare. Or just how we live our lives. I am feeling that way today. Just the simple act of getting up every day can be torture. So, please do not be deceived by the wayI look.
Lupus is a chronic autoimmune ('auto' meaning 'self') disease in which the body's immune system becomes 'hyperactive' and attacks the body's normal tissues. It is much like the body being allergic to itself.
Okay, now I am tired. I'm running out of spoons. You see even a small task such as writing in this journal has wipped me out. Now I need to go rest for a little while.
Bunches of hugs and love…LuAnne
Monday, August 2, 2004
STAIRWAY TO HEAVEN
I had a pretty sucky day today. Went to see my neurologist this morning who informed me that she thought it was time that I went for neuropsychological testing. What's funny is that I was going to ask her about it today too. But she beat me too it. We had been talking about how my month had been going and of course I was crying because it hadn't been going very well. I have been losing entire lumps of time. And, if that's not bad enough I have been forgetting how to do simple things. Such as ordering a hamburger at a drive through. After a medical appointment Gary and I went to White Castle's and for the life of me I couldn't remember how to order a hamburger. It got me so upset. He got impatient. It turned out to be a fiasco. He ordered the burgers. I couldn't stop crying. By the time we got home I was wiped out and ended up having a seizure. I find that I have seizures more often if I am upset, confused or disoriented. So its like a Catch 22 situation because the Cerebral Vasculitis causes me to be confused, disoriented and have seizures. But being confused and disoriented causes me to have seizures too. Go figure? Anyway, after the neurologist I stopped by my job for a visit. It was a visit filled with mixed emotions. 
This is another song that has been going through my head lately. It's Stairway to Heaven by Led Zeppelin.
Bunches of hugs and love Luanne
There?s a lady who?s sure
All that glitters is gold
And she?s buying a stairway to heaven.
When she gets there she knows
If the stores are all closed
With a word she can get what she came for.
Ooh, ooh, and she?s buying a stairway to heaven.
There?s a sign on the wall
But she wants to be sure
?cause you know sometimes words have two meanings.
In a tree by the brook
There?s a songbird who sings,
Sometimes all of our thoughts are misgiven.
Ooh, it makes me wonder,
Ooh, it makes me wonder.
There?s a feeling I get
When I look to the west,
And my spirit is crying for leaving.
In my thoughts I have seen
Rings of smoke through the trees,
And the voices of those who standing looking.
Ooh, it makes me wonder,
Ooh, it really makes me wonder.
And it?s whispered that soon
If we all call the tune
Then the piper will lead us to reason.
And a new day will dawn
For those who stand long
And the forests will echo with laughter.
If there?s a bustle in your hedgerow
Don?t be alarmed now,
It?s just a spring clean for the may queen.
Yes, there are two paths you can go by
But in the long run
There?s still time to change the road you?re on.
And it makes me wonder.
Your head is humming and it won?t go
In case you don?t know,
The piper?s calling you to join him,
Dear lady, can you hear the wind blow,
And did you know
Your stairway lies on the whispering wind.
And as we wind on down the road
Our shadows taller than our soul.
There walks a lady we all know
Who shines white light and wants to show
How ev?rything still turns to gold.
And if you listen very hard
The tune will come to you at last.
When all are one and one is all
To be a rock and not to roll.
And she?s buying a stairway to heaven.
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