Twelve Days of Sarcoid

On the first day of Sarcoidosis my illness sent to me a wrecked truck due to very blurry eyes.

On the Second day of Sarcoidosis my illness sent to me two swollen legs  and a wrecked truck due to very blurry eyes.

On the Third day of Sarcoidosis my illness sent to me three hospital bills in collections, two swollen legs and a wrecked truck due to very blurry eyes.

On the Forth day of Sarcoidosis my illness sent to me four more prescriptions three hospital bills in collections, two swollen legs and a wrecked truck due to very blurry eyes.

On the Fifth day of Sarcoidosis my illness sent to me five years on disability, four more prescriptions, three hospital bills in collections, two swollen legs and a wrecked truck due to very blurry eyes.

On the Sixth day of Sarcoidosis my illness sent to me, six achy joints, five years on disability, four more prescriptions, three hospital bills in collections, two swollen legs and a wrecked truck due to very blurry eyes.

On the Seventh day of Sarcoidosis my illness sent to me seven organs infected, six achy joints, five years on disability, four more prescriptions, three hospital bills in collections, two swollen legs and a wrecked truck due to very blurry eyes.

On the Eighth day of Sarcoidosis my illness sent to me eight painful breaths, seven organs infected, six achy joints, five years on disability, four more prescriptions, three hospital bills in collections, two swollen legs and a wrecked truck due to very blurry eyes.

On the Nineth day of Sarcoidosis my illness sent to me nine hot flashes, eight painful breaths, seven organs infected, six achy joints, five years on disability, four more prescriptions three hospital bills in collections, two swollen legs and a wrecked truck due to very blurry eyes.

On the Tenth day of Sarcoidosis my illness sent to me ten skin infections, nine hot flashes, eight painful breaths, seven organs infected, six achy joints, five years on disability, four more prescriptions, three hospital bills in collections, two swollen legs and a wrecked truck due to very blurry eyes.

On the Eleventh day of Sarcoidosis my illness sent to me eleven dizzy spells, ten skin infections, nine hot flashes, eight painful breaths, seven organs infected,  six achy joints, five years on disability, four more prescriptions, three hospital bills in collections, two swollen legs and a wrecked truck due to very blurry eyes.

On the Twelfth day of Sarcoidosis my illness sent to me twelve migraine headaches, eleven dizzy spells, ten skin infections, nine hot flashes, eight painful breaths, seven  organs infected, six achy joints, five years on disability, four more prescriptions, three hospital bills in collections, two swollen legs and a wrecked truck due to very blurry eyes.

My Eulogy... (no I am not dead yet!)

I know, it sounds morbid... But I have written this letter hoping it will someday be read as my eulogy. I wrote it some time ago and just came upon it while lurking into my old files this morning. I updated it a bit and feel it is important enough to share with you now. (hopefully long before I am gone)

The following is my letter, please read it with the thought that it is only that I care that I share this with you...

Well I must be gone. I do hope I was there to see Chad grow up into the handsome, God loving young man that I have always envisioned. And that Jennifer has finally found the piece of the puzzle in her life that will make her whole and joyful. They both have so much to give. They are both the absolutely most cherished gifts God has given me.

Right now as I write this I am not at the brink of death. I do have a disease called sarcoidosis that may or may not be the end of me, but I do not expect to die soon (but you never know?). I am just a 50 year old woman that realizes that life on earth is short and I can be taken away at any second before I am able to say my peace.

Each time that someone I know dies or even someone I hear about on the news, I think to myself "were they able to say their peace before they left?"

I went to a memorial service for a friend that died of breast cancer. Many nice things were said about her. "She was a 'good' mother and a wonderful friend". "She enjoyed life and had no regrets." Then when it came time for someone to mention her dwelling place at the time, it was always "Where ever she is..." or "her spirit is among the clouds..."

There was not one person that knew for sure where she went. I don't think she really knew were she was going. I do not claim to know either.

I do not want anybody to say what a 'nice' person I was. My prayer is that my life and death would point to Him that I lived and still live for. Christ Jesus, the one and only true God. The only way of salvation and eternal life in heaven! My only regret will be that I may have lead my life for my own goals and missed the opportunity to express the love of Christ to my family and friends. If I were to be here in heaven and know that I would never see you again, I would surely have the deepest regret.

Well, I want to tell you were I am now. I am in Heaven! I did not die, I just changed residence. And it is not because I was a 'good' mom (I often wasn't). It is not because I was a 'good' friend or that I volunteered at a homeless shelter once. None of these things make someone worthy of acceptance into heaven.

When I was young I had no faith. I was taught that either there was no God, or "He created the world and left it to it's own devices... we were on are own" I was self absorbed with a mission to fill a void in my life. I was not sure what caused that void. I thought it might be the love of men. It wasn't. I thought it might be popularity, been  there done that... I had fun, but when I came home, the void was there, still waiting to be filled. I continued my searching, often times trying to cover the void with food, alcohol or other vice. I certainly did not even imagine that something or someone of a divine nature was what I wanted or needed. I was atheist, (agnostic or maybe Deist at best). I made fun of Christians and scoffed at the thought of Church or the need of a savior. Church was for the weak. Christianity was a crutch. Not what I needed!

Then I was exposed to the Bible. Not by choice mind you, but by a coworker that just had to listen to his "Christian" radio loud enough that I could not ignore it. At first it seemed stupid, and boring. but the more I listened, the more my curiosity was raised. I started reading the passages that the radio preacher referred to. The direction my search had turned went on a path that I walked on for weeks. At first I thought I was reading the Bible in order to be able to find flaws and discount it. What I did not realize is that God was calling me to Him in His Words.

I still had reservations about the Bible being True or Divinely inspired Living Words. Until one night. I had a dream. In this dream, I was sitting in my living room reading the Bible. While reading, I was mumbling that "all of this could not be true! A man swallowed by a fish!? A donkey who talked!? A man brought back from the dead!? NO! These things must be myths or metaphors...." then, in my dream, a man appeared sitting next to me. He put one hand around my shoulders in a warm comfortable embrace. With his other hand he put it on mine over my open Bible. He said only eight words, "Do not slaughter the Word of the Lamb". It was a simple dream but so powerful that I immediately woke up and was on my knees asking for forgiveness for ever doubting Him or His Word. You may think that believing in a dream is silly, but from that day forward I have never doubted His Word. In every verse there is wisdom and relationship with Him. (Some passages, I did not understand while I read them, but later in life, in some situation, God brought to my mind that passage and I understood! It had not 'fit' into my life at the time, but it was just what I needed to know in the future! God promises that His Word will always bring fruit!)

The more I read, the more I was convicted of my own sin, my own weakness. In the same Words He used to reveal my sin, He also showed me His Love and Forgiveness. I started going to a church. The priest taught a lot of "feel good" sermons. I guess I needed that at the time. But it did not challenge me to grow. Soon I found that the "I'm Ok You're OK" churches were missing the point. I was still learning and still not totally convinced in the Truth. My best friend (a very new agey 'I am god, you are god, we are all in commune with nature' type of person) was glad that was leaving the church. but she did not understand that I was not leaving the church, I was seeking His Church.

My son was growing up without a father and through the words of the Bible, I was assured that a more fundamental Church with a male administration was where we needed to be. We started going to a Baptist Church (not the only good church out there, but a good one for us at the time). At that time I still had no idea what a 'born again Christian" was. I remember thinking then, that I was going to church... reading the Bible, I was "good enough" to get into heaven. No one is "good enough". I actually found this to be true and very profound idea... in 1 John 1:9-11 He says... If we confess our sins, He is faithful and just to forgive us our sins and to cleanse us from all unrighteousness. If we say that we have not sinned, we make Him a liar, and His word is not in us. Only God is "good" and only He can make us "good enough"

Through more intense Bible study and great fundamental teaching, I was able to come to my knees and see my helplessness. I accepted His Forgiveness. I have met with many challenges since then. I have stumbled in sin many times since my point of salvation. But I knew He was there not to condemn me, but to lift me up and help me to start over. I can truly say to you now that I have never felt that 'void' since giving my life over to Christ. I can find true joy even in the midst of crisis. He assures me of my hope.

God does not measure our goodness or grade us on some kind of curve. We are human and born to sin. And there is nothing that we ourselves can do to be "good enough" for God's presence. God is a 'just' God and must carry out justice. In the Bible He says the wages of sin is death. Romans 6:23 For the wages of sin is death, but the gift of God is eternal life in Christ Jesus our Lord. this is not a physical death he is referring to. It is Hell. We cannot pay for or own sin unless we are sent to hell. But along with being a 'just' God, He is also a Loving God. He wishes that we do not perish. He has devised a plan, a perfect plan to redeem us from our fate.

He came down from heaven in the person of Christ Jesus. He lived a sinless life, He taught us how to have relationship with Him. then at the appointed time, He gave His life and shed His blood for me, For you. He, in His human form, able to experience physical and emotional pain, was able to pay the price for our sin. To forgive our transgressions so that when we die a physical death, we will be able to experience an eternity of joy in His presence. He wants a personal one on one relationship with you!

He offered this gift to me many times before I recognized it and accepted it. If you are listening to this or reading this, I believe this is the moment He is offering it to you.

Church is for the weak (I was). Christianity is a crutch (I could not stand with out the help of Christ). Exactly what I needed!

Until you know Him you cannot truely understand real Truth. It is something that cannot be explained except to say it is the most wonderful thing in this world! It is a joy that cannot be squelched out by crisis, death, poverty or persecution.

I can never conveince you Only He can. I can only point you to Him.

Kind of like that old saying, "you can lead a horse to water, but you can't make him drink" Well if you don't wan't that horse to die of dehydration, you had better get him near the water! After that it is up to him to live or die. PLEASE! Choose LIFE!

I did not say He is the one True God, He did, and I believe him...

John 14:6 Jesus said to him, "I am the Way, the Truth, and the life. No one comes to the Father, but by Me.

Jeremiah 10-10 But Yahweh is the true God; He is the living God, and an everlasting King: at His wrath the earth trembles, and the nations are not able to abide His indignation.

1 John 5:20 We know that the Son of God has come, and has given us an understanding, that we know Him who is True, and we are in Him who is True, in His Son Jesus Christ. This is the True God, and eternal life.

Is Jesus really God made flesh? YES!!!!
John 1-14
1 In the beginning was the Word, and the Word was with God, and the Word was God.
2 The same was in the beginning with God.
3 All things were made through him. Without him was not anything made that has been made.
4 In him was life, and the life was the light of men.
5 The light shines in the darkness, and the darkness hasn't overcome it.
6 There came a man, sent from God, whose name was John.
7 The same came as a witness, that he might testify about the light, that all might believe through him.
8 He was not the light, but was sent that he might testify about the light.
9 The true light that enlightens everyone was coming into the world.
10 He was in the world, and the world was made through him, and the world didn't recognize him.
11 He came to his own, and those who were his own didn't receive him.
12 But as many as received him, to them he gave the right to become God's children, to those who believe in his name:
13 who were born, not of blood, nor of the will of the flesh, nor of the will of man, but of God.
14 The Word became flesh, and lived among us. We saw his glory, such glory as of the only Son of the Father, full of grace and truth.

You ask about Jews, Muslims, Hindus, Buddhists, etc. that do not accept Christ as their savior? God offers them the same opportunity He offered me! To put away their false idols and follow Him!

Why? Jesus said, no man comes to the Father except through Me. To get to God, the only way is through Jesus because of the price He paid for our sin. No one else died and was ressurected for us, only Jesus. In fact, Christianity is the only religion, the only one, that you get to Heaven not by good works but by believing on Jesus. All the other religions require you to do or be something. Christianity only requires you to believe and accept Jesus.

Sounds harsh, but it's not. There are countless people in these religions that converted to Christianity and now realize true love, peace, joy and happiness. True Christianity is not a list of do's and don'ts, but rather is a relationship with God, the creator of you and me.

Romans: Chapter 10 verse 9-10-13
That if thou shalt confess with thy mouth the Lord Jesus, and shalt believe in thine heart that God hath raised Him from the dead, thou shalt be Saved. For with the heart man believeth unto righteousness; and with the mouth confession is made unto Salvation. For whosoever shall call upon the name of the Lord shall be Saved..

If you pray the following prayer, you too can experience the joy and assurance of your eternity in heaven. And when you get here, we'll have a reunion like we could never have on earth! It will be a blast!

The following is from a website. the only reason I didn't use my own word's is because they have said it much better than I could have.

"The Sinners Prayer"
         Heavenly Father, I come to You in prayer asking for the forgiveness of my Sins.  I confess with my mouth and believe with my heart that Jesus is your Son, And that He died on the Cross at Calvary that I might be forgiven and have Eternal Life in the Kingdom of Heaven.  Father, I believe that Jesus rose from the dead and I ask You right now to come in to my life and be my personal Lord and Savior. I repent of my Sins and will Worship You all the day's of my Life!. Because Your word is truth, I confess with my mouth that I am Born Again and Cleansed by the Blood of Jesus! 

In Jesus Name, Amen.

One very important thing to remember is that Jesus knew you before you were ever conceived in your Mothers womb. He knew every Sin that you would commit in this life and yet he still "Chose" to die on the Cross for you. Why? Because he loves you unconditionally.

Jesus knows what we go through here in the world. Remember, He has been there and done that.  So don't ever let the enemy convince you that God doesn't love you because He does and always will. Remember, Jesus said He would never leave nor forsake us. So when we feel unloved its only because we have walked away from Him. But he's still there right where we left Him, waiting  for us to turn around and come back. Its so important that you know this, because you are "everything" to God and he loves you so much. Believe me when I say, the enemy will do anything he can to convince you that you are unloved, a failure, worthless, etc. (the devil will also try to tell you that you are "good enough" and do not need a saviour) But the fact of the matter is; "You belong to Jesus Christ!" He paid the price for you with his Blood and he is not about to let you go! NEVER! God understands... Just talk to Him for He is a very forgiving God! Believe me, I know. So be Blessed.. In Jesus Name!

I do hope you took the time to read this, knowing that it comes from my heart and my concern for you. Ponder the words and find that you might still have a void that needs to be filled. And if that void has been lifted from you, let this letter be a reason to renew yourself and celebrate the eternal life that awaits you!

I care for you very much!

Embracing the Differences

Wheel chair ramps for the paraplegic, machines that help blind people to access computers and printed materials, allow deaf people to use the telephone, and let dexterity impaired people "type" without using their hands.   Society has made wonderful provisions for the disabled. 

At home and in the workplace, we do what we can to help the challenged comfortable and productive.

But can we accommodate everyone? Not every job is a proper fit for everyone. We cannot expect a blind person to be a lifeguard at the YMCA. Nor would a taste tester at Ben and Jerry's be the best job for a diabetic. So should the disabled person "try harder" to fit in with all of society? Should we say to them 'buck up' or "get over your challenges"?  NO. We do encourage them to take their special challenges and find the job that is suited to their needs. We encourage them to turn their challenges into strengths that have a place in this world.

But what about the person struggling with a "hidden" disability? The person with ADD, mental challenges, sensory disorders or....? The list goes on. When a disability is not immediately 'visible', co-workers and even family have trouble understanding a need for accommodation. They may perceive the person as unmotivated to "fit in".

Asperger's can be considered a hidden disability which results in great difficulty getting additional support and empathy. This is largely due to the fact that many of these people tend to be seen as immature, self centered or "picky". Unless you live with a person with aspergers, you may make careless statements like "you would change if you really wanted to"  "Life isn't easy, deal with it!" "you will never make it in this world unless you try harder"

A person with Asperger's can "change" about as easily as a diabetic can stop taking insulin. 

My son has Asperger's. Though not as severe as some, he has several 'challenges' that he must live with. I have been told be well meaning people that he needs to "get over his issues" I need to tell them that these "issues" may make life more difficult, but they are also things that make him special and unique.

Although there are many positive attributes to having asperger's, there are many challenging issues as well.  My son has sensory issues. Meaning that he has negative responses to certain touches and sounds. His clothing has always been a major concern. He wears very worn t-shirts and jeans 99.9% of the time. His clothing has to be extremely soft or he will be distracted and uncomfortable beyond his control (I have been told that new shirts feel like they are poking him). Should I insist he wear 'new' clothes so that he will 'fit in'? Or should I insist that the clothes he prefers at least be clean and be happy that he is comfortable and able to do his school work without being attacked by his clothing?  I have been told that he will be expected to do better in the workplace.  I am not totally sold on that idea. In my own situation, I rarely met any of my clients face to face. Today's work force offers a multitude of great opportunities for the 'casual dresser'. It also provides an infinite world of possibilities for the 'unique' to be productive and successful.

I ask those of you that know some one with a 'hidden' disability to celebrate the positives of those people and instead of insisting that they change what they cannot control, I ask you to change what you can, your acceptance of them. Try not to force your world on them, but think of them as that unique and special piece to the puzzle that without it, our world would be incomplete!

What is it like to have Sarcoidosis?

Let me beat you repeatedly with a ball peen hammer for a while...
now you have 1/2 an idea....

     I have a disease called Sarcoidosis. At this time there is no known cause or cure for the disease. Doctors can only treat the symptoms. It is thought to be an auto immune disease and is known that it can effect every organ in the body. It causes inflammation in organs. This inflammation causes granulomas. Granulomas are cluster of cells that form in tissue that has been inflamed. They are small 'sesame seed" sized and shaped particles that will clump together in the affected organ and can cause scar tissue and permanent damage if not treated. Although it has been found in almost every part of the human body, most patients get it in the lungs, lymph nodes and sometimes eyes and skin. Fortunately, in a majority of sarcoid patients, the symptoms are mild to moderate and the disease will (sometimes) go into permanent remission in 2-3 years from onset. Then there are the top 10-20% that have severe and chronic symptoms that will most likely need treatment for a lifetime. According to my pulmonologist, I am in that top group. 

     In 2001, it was found in my eyes and thoracic lymph nodes. Although difficult, I was able to continue working full time until Dec 2004. I then had to start working from home to allow long breaks from the computer to avoid eye strain. In 2005, I had to stop working and driving (hit a telephone pole that I literally did not see). in Feb 2006, I was officially announced 'legally blind' in both eyes, even though my vision was in that state for months before the official statement by the doctor.
     In 2006 and 2007, I had 2 separate eye surgeries to remove cataracts, clean out the old viscous fluid, replace with new fluid, and sew in a steroid implant to the back of each eye that would slowly release steroids to the eye for 24 - 30 months. My left eye never regained usable sight. After my second eye surgery, my right eye can now see, but I now have permanent scarring that makes all of my vision wavy (like a fun house mirror but not so fun).  My depth perception is off and I often stumble and sometimes fall if trying to walk unassisted. I rarely venture out of my apartment without the aid of my son or other family member for fear of falling. Reading even large print is often a chore and causes severe eye strain, dizziness and headaches. And yes, being on the computer is bad for my pain. I am on it a lot  since it is my only social outlet, but I do need to take several long breaks from it using cold compresses over my eyes to help with eye strain.
     I am also under doctors orders to stay out of the sun at all cost. With my disease, my body is unable to process vitamin D, especially the kind produced through sun exposure. My doctor has told me that exposure to the sun will make my disease worse and resistant to treatment. As I really hate the heat and being heavily clothed I many times do not obey this order. Then I wonder why I feel so lousy for hours or days after a small amount of sun exposure. ... DUH?
     As of September 2007, the sarcoidosis has now been found in my lungs, liver, skin, spleen, thoratic and abdominal lymph nodes making it difficult to breath and causing a lot of pain.
     The medications to treat my symptoms of sarcoidosis are Prednisone (a steroid) and Cytoxan (a chemotherapy drug). They are both used to suppress the immune system therefore suppressing the inflammation and subsequent granulomas formed in the organs. They also both come their own set of complications and side effects, but I am assured that the results of not taking them would be worse.
     As bad as all of this may sound, I know that it is just different path I am on now. I have more time to raise my teenaged son and have met many new and wonderful people that I may have not crossed paths with had it not been for my disability. I still have many many blessings to count. For the opportunity to be closer to my family, I even count sarcoidosis as a blessing.

Find out more about sarcoidosis by visiting http://www.stopsarcoidosis.org

Thank you for your time to read my story.
Jeri

Experiments in Pain Management.

 
A SHORT HISTORY OF MEDICINE:

"Doctor, I have an ear ache."

2000 B.C. - "Here, eat this root."
1000 B.C. - "That root is heathen, say this prayer."
1850 A.D. - "That prayer is superstition, drink this potion."
1940 A.D. - "That potion is snake oil, swallow this pill."
1985 A.D. - "That pill is ineffective, take this antibiotic."
2000 A.D. - "That antibiotic is artificial. Here, eat this root!"

As I am in the midst of "pain pill prohibition' (restricted from taking any pain meds until my next medical test tomorrow)... I am forced to get creative in my pursuit of pain alleviation.
     Due to health issues of sarcoidosis and arthritis, I am left in pain 24/7. In most cases, it is severe enough to warrant prescription meds. If I do not have those, I will take cold or sinus meds that have many pain relieving ingredients. Unfortunately, neither of these is "allowed" for 48 hours before testing for my ear issues. Acetaminophen and ibuprofen are allowed on a minimal basis. (even at the 'maximum' they never worked before) so I am exploring alternatives.
     For my back (arthritis and inflammation) I used to use a muscle relaxer and pain meds together. They worked pretty well. Today I am using a microwavable bean bag. I make it as hot as possible with out causing it to burst into popcorn. Having this burning hot bag on my back really distracts me from the original pain by creating a new pain.. Sounds silly doesn't it? But it works. I seem to be able to tolerate the pain of the bag, possibly because I know that I can control it. If i remove it, the pain of the heat immediately leaves, put it back and it starts again... I like control. Unfortunately when it cools down or is removed for any length of time the original pain rears it's ugly head and I am back to square one.
     I also have sinus pain. Used to use Sudafed Pain for this. now I use the microwave bag (just not as hot). and... I have found to my delight that spicy food (as in my home made soup) will clear the sinuses really good. It is something I had not realized before and I will be using this method of sinus pain relief more often in the future. Tasty!
     My headaches are a whole other issue. still haven't found a fix for them yet, but an occasional Reese's does seem to take the edge off...   Okay... so it doesn't but I will take any excuse to have a Reese's!  In the words of my favorite duck...  "Keep your hands off me. I came here for those solid-gold goodies, and I ain't leaving without them. On account of I am greedy."

Introductions

My name is Jeri. I am 50 years old (going on 90). Single mother of 2 grown children, retired automotive illustrator, homebound hermit that lives in an apartment that would make any person featured on the television show "Hoarders" feel good about themselves.

      So here I am 'Blogging'. Always thought blogging was for professional journalists or for people that had really important things to contribute to the internet. So I never thought to do one myself.
      But I have found myself on Facebook adding way too much information about myself to my wall. Annoying some friends and boring others. Now while thinking about the 'boredom' aspect of my writings, I figure that could be put to good use. Many of my friends suffer from insomnia. By writing about my daily life, views on political issues and my ever so interesting health updates, I might be able to cure their struggle with sleeplessness. I cannot promise that the 'annoying' side of my writings won't pop up now and then, but I am guessing that a good sleep will befall you more often while being polite enough to attempt to read my blog.