LUPUS 101

Hello precious friends and family and greetings from the UK! J and I have really adjusted to life here...and...

We have a new family member...meet Bella! She literally was a blessing from the Lord. We were praying for a pet if He wanted us to have one...but didn't want to go out and look for one. She literally showed up on our doorstep...all alone and very hungry. Needless to say we took her in and after final approval from our landlord...she is all ours! And getting a big tummy!!! :)

Now...this update is more of a recap to some...but also the first time many of you may be reading about my illness... SLE LUPUS. After being diagnosed I have had so many people come to me who have similar illnesses and it has been a blessing to minister to them! I am learning so much from the Lord...and want to share that and the knowledge of what I am also learning "medically" with others. My heart is to educate others and make them aware of this disease. So here we go... (most information below found via web: www.dolanarthritis.com

So what is SLE Lupus?

(Lupus – Systemic Lupus Erythematosus)

Systemic lupus erythematosus (also called SLE or lupus) is a chronic inflammatory disease that can affect the skin, joints, kidneys, lungs, nervous system, and/or other organs of the body. The most common symptoms include skin rashes and arthritis, often accompanied by fatigue and fever. The clinical course of SLE varies from mild to severe, and typically involves alternating periods of remission and relapse. The picture above shows the various ways Lupus affects the body.

For me my first tale tale signs were the rash across my face...extreme fatigue...hives...and extreme muscle and joint aches...to the point I could not lift myself out of bed. I also began to lose my hair.

They symbol for Lupus is the butterfly...which resembles the famous "butterfly rash" or "Malar rash" that is usually the first tell tell sign of someone with the disease.

Probably the most famous person with Lupus is Seal...where it is not normal for the rash to scar...his unfortunately did.

Here is a picture showing the first signs of my malar rash. Often I would have swollen lips as well.

What Causes Lupus?

SLE is an autoimmune disorder which develops when the body’s own immune system, which normally protects against cancers and invading infections, begins to attack the patient’s own tissues (known medically as a “loss of self-tolerance”). This occurs first through the production of “auto-antibodies” (antibodies are immune system cells that attack foreign microbes; auto-antibodies attack a person’s own cells). As the attack continues, other immune system cells join the fight. This leads to inflammation, blood vessel abnormalities (vasculitis) and deposition of immune system cells in organs which causes tissue damage.

Lupus affects 10 times as many women as men.

Treatment depends on the type and severity of symptoms you experience.

For me the treatment started with a high dose of steroids. The side effects are usually very unpleasant...especially for women as they almost certainly will make you gain weight...mostly water weight. You will notice how swollen my face had become. This is effect of the steroid is called "Moon Face"...nice huh?

While there is no cure for Lupus...there are many maintenance medications available. The idea is that they will sustain your body so that it will not flare in overdrive and affect major organs. The hope is to try to get the patient's body calm and into remission.

Above is an unfortunate result of trial and error of the medication. Here Hydroxychloroquine was administered...which led to a major drug reaction.

The Lupus Foundation of America (LFA) estimates between 1.5 – 2 million Americans have a form of lupus, but the actual number may be higher. More than 90 percent of people with lupus are women. Symptoms and diagnosis occur most often when women are in their child-bearing years, between the ages of 15 and 45.

Time for a laugh...I realize this is a heavy topic...so I thought this would releive some tension. I LOVE this quote from HOUSE. You have to watch the show to understand...but it is funny. I have a t-shirt that says "Finally it was lupus!"

One of the biggest struggles I find that people with chronic illnesses face is how other people relate to them. Some of them pitty them...most sincerely care and want to help...but some avoid you all together simply because they do not know what to say. In dealing with that subject...there are some you WISH would avoid you because of what they say...not meaning to... but usually saying something very hurtful. So I thought I would list some things NOT to say to someone with a chronic illness...some from my own experience...

10: I've seen all the diet cokes you drink...you should stop that!

Please don't judge...remember for Lupus in particular there is no known cause.

9: My cousin has what you have and she was cured by...

Please know that each patient is different. For us...we believe that God has surrounded us with wonderful Doctors who are so tender towards us...and that He will give them the wisdom to be able to help me to the best of their ability.

8: I've heard about this miracle natural herb...

Been there...done that...

7: I've been doing some research on your "lupy"

First of all...if you don't even know how to pronounce it...you probably should not be giving any advice... :)

6: We believe that your disease is caused by stress...temporary...and that you need to get professional counseling for the stress in your life.

Big NO NO. Again...no known cause for Lupus as with many chronic illnesses...it is definitely NOT temporary but unfortunately life long...and stating that someone needs professional help is a slap in the face and could make a person with a very life- threatening disease think it is all in their head and not go and seek the medical attention they should.

5. If you would just do this or that it will get your mind off of it.

Please stop bringing things for us to do...it just makes us feel bad when we are unable to do it! If we want something we will ask...promise! :)

4. If you did more physical exercise...

Stop...most of the time people with chronic illness have enough of a time just getting out of bed.

3. If you had more faith...you would be healed...because Jesus has already overcome disease at the cross.

Yes...He has overcome death...disease..it all at the cross...but in our sin fallen world...here on earth...there is death and disease. But Hallelujah...because I put my faith in Him...this world is not my home and one day I will be in Heaven with him...in a new and perfect body. Until then...I will carry whatever cross he bestows on me...even pain and suffering...because the Bible tells us that will happen in this life here on earth.

For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.

—2 Corinthians 12:10

Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you. But rejoice insofar as you share Christ's sufferings, that you may also rejoice and be glad when his glory is revealed. If you are insulted for the name of Christ, you are blessed, because the Spirit of glory and of God rests upon you.

Yet if anyone suffers as a Christian, let him not be ashamed, but let him glorify God in that name.

—1 Peter 4:12-14, 16

2: Where are you in your walk with the Lord?

Ummmm...don't go there...unless God tells you a direct word to confront someone. Please make sure you've had your quite time...don't make me remind you of the story of Job and his friends. Love you all though! :)

1: But you look good!

Okay this is the number one thing I get...especially that with Lupus...you don't always have the hives or rashes...they come and go. Now I found this on a website...but I had to laugh because I could so relate to someone's answer...well probably something they wanted to say out loud but instead they were screaming it in their head while putting on the prettiest grin you ever did see!

Here is their response:

THANKS! It took me 3 hours to get out of bed, 1 hour soaking in a hot bath, 3 pills, 2 hours waiting for the medication to take effect, 2 hours doing my hair and make-up to cover up the physical effects of getting on average 2-3 hours of sleep a night, and then 2 more pills before I left the house…. but THANKS for letting me know how good I look! I guess all my hard work today paid off!)

But...I will say that my diet change has seemed to help. I know that it can't hurt to eat healthy anyway! So I am just starting to research and learn just how to do that. Here are some of my "favorite things". For lupus...omega 3 is vital for healthy joints and heart...both of which are affected. So I use flaxseed and a product called Food Doctor seeds...that I sprinkle at least once per day into either my porridge, smoothie...or on top of salads. I also have been recommend by my specialists to take high doses of calcium (steroids suck calcium out of the bones) and vitamin D (since I cannot go into the sun-with Lupus...sunlight flares up symptoms).

I also have tried to go more organic and non processed. I will admit it limits you to some foods as well as is much more pricer. But we are still learning...so more updates to come on this. I love to flavor my food with organic soy sauce. I also replaced all artificial sweetener and regular sugar with honey...and haven't skipped a beat. I also don't eat enough raw fruits so I get my 5 a day in by drinking smoothies I make or a great brand I found at Tesco (a UK store)-non processed. I also have started to drink Goat's milk and use Goat's butter...I can't tell the difference!!! Anything from a cow will most likely have steroids or other medicine...which guess what...will go straight into your body when you consume them. We also cook with only extra virgin olive oil...taste yummy and good for you!

Well thanks for stopping by...I hope to have more information via this blogsite soon! But I would be ad mist if I did not say the ONLY thing that gets me through this terrible disease is the fact that my wonderful Lord and Savior, Jesus Christ gives me strength to get through it all!! He is the reason I live and breath...and the hope I have in a life after this one!