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!

The "Way of the Cross"- A Faith Check...

What's your way of the cross? In other words, what situation comes to mind when you think of the cross...in your own personal walk with the Father. For some it is heartbreak-rejection of the opposite sex...loss of a loved one. For others it is letting go... giving up all that they know to be comfortable and moving into the most remote jungles to plant seeds of God's love. And for others...it is illness-suffering real tangible pain that comes to stay for a while...with no warning...or no train ticket set for departure date in the for-seeable future. For me...well I have to be honest and say that I have felt all of the above mentioned (minus the remote jungle-insert Europe for that :). But still I can relate to all of these.

Recently I have been thinking a lot about the story, Beyond the Gates of Splendor. This is the story where 5 families all set out for the jungles of Ecuador to minister and share the love of Christ to a remote tribe called the Waodani...the fearsest tribe known at that time...and mainly known for their ruthless killings by way of spear. As God would have it-5 precious souls who were attempting to share about Jesus... were killed on the shores of a riverbank-speared to death by the very tribe they came to love. Death and suffering was their way of the Cross. But what happened after was nothing short of God's Glory revealed.

Shortly after the killings-the sister of one of the men..along with a tribe woman who had escaped many years earlier...and Elisabeth Elliot and her blonde, pig-tailed little girl all set out to join and live with the tribe in the jungle. Of course they must have had fear-but they must also have had complete faith that the Father was there.

Elliot in her book, The Path of Loneliness...speaks about a day where God met her on a boat on the side of a riverbank. She writes "I remember waking up very early one morning in a tiny reed-and leaf shelter on the banks of the Curaray River. My three-year-old and I had spent the night there with some Indians on our way home to a clearing about a day's journey beyond. Rain was sweeping over the river and the sandy beach in great waving sheets, and with the rain a huge LONELINESS seemed about to drown me. I felt that I could not face a day like that in a dugout canoe, nor did I have the least desire to get back to that clearing. Civilization was what I wanted that moment, not adventure, but I had no choice. God met me there that morning, and strengthened me with an It is written, reminding me of His promises, I will never leave you nor forsake you. I am with you always.

She goes onto write "We may be earnestly desiring to be obedient and holy. But we may be missing the fact that it is here, where we happen to be at this moment and not in another place or another time, that we may learn to love Him-here where it seems He is not at work, where His will seems obscure or frightening, where He is not doing what we expected Him to do, where He is most absent. Here and nowhere else is the appointed place. If faith does not go to work here, it will not go to work at all." She refers to this time as "The Oil of Joy".

Wow is all I could think when I read this. I thought...okay my situation seems pretty bad...and I keep looking to the "future days" when I hope to be better. Or I am looking back at a time when I was healthy and wishing I could do the things I used to do. Then it dawned on me...I very well may be getting the richest blessing of all RIGHT NOW- a very special time to trust my Father, even though I don't understand why I am going through this...and a chance to increase my FAITH...and what about this joy thing.

Joy you may ask? If you have been anything like me and had any one of the way of the cross moments mentioned at the beginning...you very well may feel like hitting me upside my head right now. You may say to me "How in the world can you talk to me about joy...you might as well pour salt in my wound!" Trust me...I have been there...and a little advise...when someone has just recently started their journey of their own personal way of the cross situation...it might not be the best time to "preach to them about how joyful they ought to be". : )

BUT-stay with me here and don't miss this...joy does not always mean to be happy...but it can also mean to simply enjoy God's presence....knowing that you have a loving Father who IS there for you and has a plan for what you are going through for your good and His glory. The Bible tells us very clearly to be joyful when we are in hard times:

Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything. -James 1:2-4

There is just something about that...that brings me security. It gets me through another "bad" day-healthwise. It gets me through those days that I would rather be out working in my previous state...then stuck inside unable to get off the couch. It sustains me to know that God has a plan for what I am suffering through-for my good...and His glory! So in that I will take the "faith test".

The fact is that most of you reading this have either experienced "a way of the cross situation" either in the past or are currently right smack dab in the middle of one. And you may be asking yourself...just like I did..."why"? But let me challenge you to stop asking why for now...and start asking-"Father...what am I to get out of this...how can this bring YOU glory". I will tell you from experience...it gets you off your pitty party with balloons and streamers and set you on a whole new level with Him...a precious gift...a way of the cross that He is walking with you...holding your hand...and asking you to walk simply by faith. Are you willing to walk that path?

New way to support us!!!

Recent Picture of J and I-at a 4th of July BBQ. I love my husband...he can always make me laugh! We have been blessed with great weather all summer!

One of our walks in the country side.

Picture from TeenStreet last year-we are praying that we will get to go (see prayer request about my passport below).

J is gearing up for all the summer conferences! And I am supporting him 100%!

Now for all you techie people (J asked me to post pictures of what he has been working on to get ready for these conferences...the MEDIA truck!)

A gift from In Touch Ministries! It allows us to do so much more high quality event cover!

Some of the inside of the truck that my honey is responsible for!

More of what Honey is responsible for...all these wires have to connect to something...so glad he is gifted in this area...I would have no clue!

Two of our fleet of vehicles. The blue van or our "tour" bus is what we travel around Europe on. Super fun! Pray for our protection though..recently while going to a conference in Ireland, the van was vandalized...someone threw a rock through the back window!

Me-having a tour of the truck...just smiling and pretending I know what they are talking about! :)

Hello Friends and Family!

Many of you have asked if you could be sent monthly reminders for your giving towards the Ministry work that J and I are involved in with OM International-Omnivision. OM has now set up a way to do just that! Please visit the link below and sign up for monthly automated giving!!! As always we so appreciate you supporting us so we can be "about the Father's business" here in England and around the world.

https://usa.om.org/GiveOnline/

Quick update on health:

Just saw the Doctor this past week. I am still very much in a flare (the illness is quite active)-but they have started me on a new medicine which basically in time will allow me to go from 5 medicines per day to only 1! It also has a lot less ill side-effects. When people ask how we are doing we say "We are broken...we are almost out of emotions...but we are so blessed! We have never felt so close to our Father! Our hearts are on FIRE For HIM!!!!! :)

Quick prayer request:

Please pray for J and I as we are about to go on the road to start our conferencing season (a total of 7 weeks we will be gone). I of course will be staying with J's family in Holland and not working the events due to my illness...but we will never be more than 2 hours away from each other!

Pray that our passports come back before the 19th of THIS MONTH! J can still go on as he has a european card which serves just like a passport. But for me...not so much. If we do not get the passports back by the 19th... I will not be able to travel on with the team and will have to make other arrangements to get over to Holland by myself. Traveling by myself in my condition would not be great! So please pray a miracle in this situation!!!

Love to you all...MoJo