Living with Lupus

I have SLE, which stands for Systemic lupus erythematosus.  It is a long-term autoimmune disorder that may affect the skin, joints, kidneys, brain, and other organs.  Each person experiences it a little differently, but one thing is the same for all of us, as of today, there is no cure.

I originally posted this article on my other blog Mind Crumbs where I usually talk about crafts, homeschool, natural remedies, and miscellaneous life happenings. However, I decided to post this particular blog here as well because I have a different fan base and I speak more often here about my health struggles and living life with a chronic disease.  I know that many of you out there are experiencing similar struggles.  I'd love to get your feedback (comment below or if you want to communicate privately, you can fill out the form on the 'Contact Me' tab).

Recently, I was in a forum on a Lupus website and there was a woman who said that she had just been diagnosed with Lupus and she wanted people to share information with her regarding what worked for them when coping with the symptoms/diagnosis of Lupus.  She wondered if there were any natural remedies that help with symptoms.  Her question was basically, "I have Lupus, now what?"

My hope is that someone will find this to be informational and/or helpful.  I want to encourage people to see that it is not all out of our control.  And if you are a friend or loved one of a person with Lupus, try to be patient, understanding, and compassionate.  Spend a little time researching Lupus (not too much...it can be scary), and just remember that you don't have to FIX IT (you can't anyway), but just BE THERE.  You can't always see our illness because our own body is attacking itself from the inside out.  But just because we look like you, doesn't mean we feel the same.  

A great website that I referred my family to when I was first diagnosed, was http://www.butyoudontlooksick.com/. Read the article 'THE SPOON THEORY'.  If you have Lupus or a similar disease, copy and paste it and send it to your friends and family!  It will help them to understand why you can't do the same things that you used to.  My husband still talks to me in terms of 'how many spoons do you have left today?'.  (That will make more sense after you read it)

Finally, after all of that, here is my letter to the woman I referred to at the beginning of this post:

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Dear (name left blank on purpose),

I am very sorry to hear of your diagnosis, but I would like to encourage you that although your life will change with Lupus, it is still possible to live a good life.    You have to be careful what you listen to however, because when I was first diagnosed, several people told me that they knew someone or knew OF someone who had died from Lupus.  That was very scary and disheartening to me, not to mention NOT HELPFUL!  People just don’t always think before they speak and sometimes they just don’t know what to say and/or perhaps don't fully know what they are talking about.  But the more I know, and the longer I live with Lupus, I have discovered that the majority of people LIVE with Lupus...not the other way around.  That is encouraging.  For me, I have family members who also have Lupus, but even so....I still did not understand much about it until after I was diagnosed.

Lupus has forced me to slow down and to constantly be aware of eliminating as much stress from my life as possible (it is an ongoing process).  Of course every person with Lupus experiences it a bit differently, but one thing that seems to touch most people is stress.  Stress seems to be a huge trigger for flare ups for most people living with Lupus.  

I've been diagnosed for 9 years now.  I take medicine but some of the simplest and most helpful tips are lifestyle changes.  They are invaluable when you realize how important they are to how you feel.

IMPORTANT CHANGES YOU CAN MAKE ARE:

* Getting sleep!  If I am overtired or struggling with insomnia, my symptoms are DRASTICALLY worse.  And I am not exaggerating, lack of sleep can really make my pain much worse.  Guard your sleep as if it was as valuable as Gold.

* Reduce Stress!  Weed out dramatic people in your life. I'm going to say that again....remove toxic people from your day to day life!  When they are family, limit your interactions (especially when in a flare up).  Take time for yourself to relax (it's best if you can do this daily, even if it is just for 15 min's), let your world stop...put on relaxing music, take a bath, meditate, etc.  I am a Christian so I will read my Bible, but do something that allows you to 'fill the tank' so to speak.  This step is SO important!  I also had to stop volunteering to do so many things, I had to limit my time out with friends and readjust things a bit.  I began having friends over more than going out, or talking on the phone instead of meeting in person.  We meet at coffee shops instead of longs days out.  (Don't get me wrong, you don't have to stop doing everything fun, but you will learn your limits.)

* Listen to your body!  It will tell you a lot if you pay attention.  I find that I must pay attention before I've gotten to the place where I've done too much (like being at the point where I'm tired or my body hurts). I've discovered that I can overdo it and not even realize it until the next day.  I might be having a garage sale, going shopping, or just standing on my feet a long time and I feel fine while doing it, but the next day I can wake up feeling awful and dealing with serious pain, inflammation, and fatigue.  Pay attention as you live day to day and figure out what activities makes things harder for you or how long you can do certain activities without suffering later (this is a trial and error process but you'll get there).

* Eat Well!  I have found that eliminating processed foods helps.  Eat whole foods (foods that are about the same as when they get picked or harvested).  Eat organic when you can (I notice benefits from reducing the chemicals I'm ingesting).  Farmers markets are great.  Many local farmers may not be certified organic but they use as few chemicals as possible and produce great food that had not been processed for traveling thousands of miles via trucks, etc.  The farmers are usually happy to tell you their farming practices.  Buy meat from local farmers if you can (split a beef with a friend or two if you eat meat)...find someone who lets their cattle graze and eat a natural diet with minimal use of antibiotics.  Better yet....eat Venison, Elk, or Wild fish (be careful, some lakes and other locations can be stocked with farm raised fish).  I didn't change my eating overnight...its been a process stretching many years, but each change is progress.  When faced with a food choice, try the best option available.  And remember, eating fresh fruits and vegetables isn't just a better option; they provide much needed nutrients for your body. 

* Surround yourself with good people!  There is an old saying that says 'We are a product of our environment'.  While I don't totally support that saying, there is some truth to the idea that if we are surrounded with negative people...we tend to see things as worse off and it causes more stress (obviously a bad byproduct) and is unlikely to help you.  But if you surround yourself with people who encourage you, lift your spirits, make you laugh, love on you, and who support you...you are likely to be less stressed and you will enjoy your life much more!

The good news is that all of these things ARE within your control!  There is so much that is unknown about Lupus and varying ideas of how to treat the symptoms.  I encourage you to take control of your life, be informed and don't just expect that a Dr. will give you everything you need.  They just can't and I find that often they are just making educated guesses regarding what will help you.  Never be afraid to ask questions or tell them the details of how you're feeling or what hurts.  Be your own health advocate.  And getting a second opinion regarding new treatment is something you might want to consider as well if it is financially feasible. 

None of these things seem like rocket science, and they are all sort of common sense things that most people know....BUT don't be fooled into thinking that they are not important.  Even though we know these things, you may find it is much harder to put into practice than you think.  And as time goes by, we discover the true benefits of having these things in place.  You can take all the medicines that a Dr. can prescribe, but if these other areas of your life are out of order, you will still struggle.  I know this from experience.

I know this is a very long response.  These are just things I wish someone would have shared with me when I first found out I had Lupus.  I know it may seem overwhelming, but remember these are things to do over a period of time.  You don't have to change everything today.  I would like to also share with you that because I have Lupus and have made these changes over the years, my life is better.  I have way less stress, I am surrounded by friends who love me and encourage me, I value the things more that really matter in life, I don't take as much for granted and I focus on stopping to smell the roses (so to speak).  I'm far from perfect, but I am much better than I used to be!

One thing my Dr of many years shared with me the day I was diagnosed was this, "Jessica, you can do this!  Don't allow this to beat you or ruin your life."  I personally had a long story of medical issues before my Lupus diagnosis, and I had just gotten through 3 back surgeries and a spinal implant to help with permanent nerve damage in my leg when I was told I had Lupus....so I was very distraught when I was told I had Lupus because I thought I was finally feeling better after 3 of the worst years of my life.  I didn't want to hear that I had another thing to battle.  But my Doctor was right...I am surviving with Lupus.  I have good days and not so good days, but it is possible to manage it!

Be encouraged.....and know that some people with Lupus have infrequent flare ups.  And I've heard of many people who have adjusted the things I mentioned above and DRASTICALLY reduced their flare ups.  When I can manage my stress and environment well....I do SO MUCH better!

I hope that this helps and isn't just completely overwhelming. 

Best Wishes,

Jessica

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LUPUS TRIVIA 

The following celebrities suffer from Lupus:

• Tony Braxton (Singer)
• Seal (Singer) - A Lupus rash was the cause of his facial scarring.
• Terri Seymour ("Extra" Correspondent and former girlfriend of Simon Cowell)
• Nick Cannon (Actor, Host, Comedian, & Musician)
• Tim Raines (Athlete/Baseball)
• Portia de Rossi (Actress, Wife of Ellen Degeneres)
• Barbara & George Bush's Dog Millie (Yes, that seriously made the 'celebrity' list.  Ha!)
• Kelly Stone (Sister of Actress Sharon Stone, the two started Planet Hope)
• Mary McDonough (Actress best known for her role as "Erin" on "The Waltons"
• Michael Jackson (Singer)

Purpose Amidst The Pain - God's Wisdom

Have you ever wondered WHY God has allowed pain and suffering into your life?  I know I have!  In July (2011) I wrote about my personal journey with chronic pain and said I would be writing more about it (as well as writing about living in circumstances that we find unpleasant).

The bottom line is that no matter whether you feel life is difficult, not fair, painful, or just confusing...there is often an innate desire within us to find the purpose.

In The Beginning...

I feel that to give you some perspective on my opinion regarding this matter, I need to first show you where I start when it comes to this subject.  I begin at the beginning....Genesis.  

When God made Earth and Mankind, there was no sin, no death, no separation between God and man.  God walked in the garden with Adam and Eve.  They had eternal life...in a perfect world.  There is a reason why we have an internal desire for a life without pain, suffering, sickness, and strife....that kind of world is the one we were first made to live in!

^"God created man in His own image, in the image of God He created him; male and female He created them. God blessed them..." Genesis 1: 27-28

^"God saw all that He had made, and behold, it was very good." Genesis 1:31

"The LORD God planted a garden toward the east, in Eden; and there He placed the man whom He had formed. Out of the ground the LORD God caused to grow every tree that is pleasing to the sight and good for food; the tree of life also in the midst of the garden, and the tree of the knowledge of good and evil." Genesis 2:8-9

 

 In Genesis chapter 3, Adam and Eve were tempted and fell victim to the serpent's lies and therefore ate the fruit of the tree of knowledge of good and evil, which they were expressly told not to eat.  

"The LORD God commanded the man, saying, “From any tree of the garden you may eat freely; but from the tree of the knowledge of good and evil you shall not eat, for in the day that you eat from it you will surely die.”  Genesis 2:16-17 

Once this occurred, it changed the fate of humans and their life on Earth forever.

God told Adam and Eve that their consequences for their blatant disobedience to His instruction would be physical and spiritual death.  Spiritual death happened immediately - Adam hid from God and was aware of his nakedness and separateness from God as he was afraid of Him for the first time (Genesis 3:8-13). Physical death happened immediately as well - His human body began to die once the fruit was bitten.  This was the beginning of sickness and death (Genesis 2:17; 3:19).

From these first human parents, our DNA was changed forever.  Every generation from Adam onward would experience physical suffering, the decay of the human body and the vulnerability of the immune system.  In addition, mankind would live in a different kind of relationship with God, no longer together in the garden...but separate and in need of a Savior. 

Additional consequences were given as a result of eating the forbidden fruit. Mankind was expelled from the Garden of Eden (Genesis 3:22-24) which was self sustaining and perfect, providing them with all the food they would need for survival via seeds and fruit (Genesis 1:29; 2:9).  Being outside of the garden also meant they would be unable to walk in a physical and unhindered fellowship with God. (Genesis 3:8)  The land outside of Eden was hostile and mankind would now have to work laboriously in the fields to provide the food they would need to survive (Genesis 3:17-19).  Women would now have pain during child birth.  There was also a shift in the role of a wife after the sin of eating the fruit.  She would have a desire of equality with her husband that would not be met, as her husband would now rule over her (Genesis 3:16).

Do you think any of these consequences of that first sin might contribute to your pain and suffering?  Would you have your current circumstances or trials if you were able to walk in the Garden of Eden, being in fellowship with God the Father and eating of the fruit? 

I had mentioned before that I believe that in order to really understand a purpose for our pain, we have to go to the beginning of our story.  Because of the first sin, and the way it changed the world and our lives, we live in a world that includes sin, death, injustice, crime, disease, heartache, and disappointment.

That is the bad news, but the good news is that the story doesn't end there.  God sent the Redeemer, Jesus Christ, and He comes to give us abundant Life.

"The thief comes only to steal and kill and destroy; I came that they may have life, and have it abundantly." John 10:10 

We are instructed that even though we are required to live in this post-fall world for a time, the redeemed must keep our thoughts and our focus on Jesus and on the eternal life that He has provided us through His sacrifice on the cross. 

"Therefore if you have been raised up with Christ, keep seeking the things above, where Christ is, seated at the right hand of God. Set your mind on the things above, not on the things that are on earth. For you have died and your life is hidden with Christ in God. When Christ, who is our life, is revealed, then you also will be revealed with Him in glory." Colossians 3:1-4

We also must remember that God loves us more than we can even comprehend...that's why He sent His Son to be a sacrifice for all our sins to take the punishment for our crime. Even after Adam and Eve sinned, after He had to destroy our wicked world with the flood...he still loved us!  God wants to bless us, and He made sure that would happen for each of us who choose to follow Him!
 
^"Sing praise to the LORD, you His godly ones, And give thanks to His holy name. For His anger is but for a moment, His favor is for a lifetime; Weeping may last for the night, But a shout of joy comes in the morning." Psalm 30:4-5

So, you may be wondering, if God loves me so much then why is He allowing me to suffer?  One reason He allows such things is because we are subject to the consequences of sin in our current world.  That is why He has promised us a new world that we will live in for eternity.

"Then I saw a new heaven and a new earth; for the first heaven and the first earth passed away, and there is no longer any sea. He will dwell among them, and they shall be His people, and God Himself will be among them, and He will wipe away every tear from their eyes; and there will no longer be any death; there will no longer be any mourning, or crying, or pain; the first things have passed away.” Revelation 21:1,3,4

The reason for suffering is 
not the same for every person or circumstance.  ONLY God knows the true reason, but the bottom line is that nothing happens in this world without God allowing it to happen.  That doesn't mean that it was His original desire for us (he showed us His original design in Eden).  

God does promise His people that He will give us strength and comfort to endure life this side of Heaven. 

"Do you not know? Have you not heard? The Everlasting God, the LORD, the Creator of the ends of the earth does not become weary or tired. His understanding is inscrutable. He gives strength to the weary, and to him who lacks might He increases power. Though youths grow weary and tired, and vigorous young men stumble badly, yet those who wait for the LORD will gain new strength; they will mount up with wings like eagles, they will run and not get tired, they will walk and not become weary." Isaiah 40:28-31 

"No temptation has overtaken you but such as is common to man; and God is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will provide the way of escape also, so that you will be able to endure it." 1 Corinthians 10:13

God will cause good to come out of all of our bad circumstances if we are His.

"And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose." Romans 8:28 

Sometimes God allows pain and suffering for the purpose of bringing other to Him or to bring Him Glory, which is a way of sharing Him and His ways with others.

In John 11 you can read the story of Lazarus, the man (a friend of Jesus) who died and Jesus brought back to life.  Jesus knew that Lazarus was deathly ill because his sisters Mary and Martha had come to Him and told Him. He was deeply troubled when Lazarus died because He loved him and his family. But there was a greater purpose, if he had just healed Lazarus in the beginning it would likely have only effected his family and maybe a few in his community, but raising Lazarus from the dead is a story still told 2,000 years later!



We may never know the details behind the 'why's' of our suffering this side of Heaven, but we can trust that none of it is a surprise to God.  We can trust that God will give us the strength to endure and if we let him, the courage to come through it victoriously.  We can't be overcomers without trials to overcome.  Sometimes the biggest testimony is to be going through things that are obviously too difficult to endure alone (to you and to those around you) and for God to give you His peace and joy right in the middle of it all.  


Having strength to endure, courage to continue going forward, and the faith to give all your emotions about your circumstances to Christ and replacing them with His peace, joy, and love.....these are acts that give Glory to God.  This process is supernatural!  It takes us laying down our earthly cares, hurts, and feelings and replacing them with supernatural gifts that come from The God of Love.


Focus on Jesus....someday you may know the reason behind the hurt, or perhaps you will lose your desire to want to know, but either way you will be in relationship with the One who made you...who also happens to be the only One who knows you fully and has the ability to heal you from the inside out.


My prayer today is for all of us who have suffered in our lives, that we would be able to stop focusing on everything that hurts or all that is bad and replace it with the promises of God.  That supernatural peace would wash over us...and in the middle of it all we would find Joy....abundant Joy....the kind that makes us smile.  May we take all of our cares to Jesus and ask Him to take care of them, knowing that we are leaving it in capable hands.  May God bless our efforts of obedience and may we bring Him Glory.  Amen.

My Struggle With Chronic Pain

A little while back I posted an article called My Invisible Disease which I got a lot of feedback on.  Because this seemed to be a subject that so many could relate to, I wanted to write a little more on the subject in hopes that someone will be encouraged or at least know that they are not alone.

I plan to write a few posts on this subject matter, so I thought that first of all I would give you an idea of my history so that hopefully you will see that I indeed have experience with the things that I will be writing about regarding living with chronic pain.

I suffered from severe migraines all through High School, College, and the early years of my adult life (they improved once I had my son, but I still have them on occasion).  In my early 20's I suffered for over a year with ulcers (not knowing that is what it was) and later I found out, after finally going to the Dr., that I had over 40 ulcers!  Of course that was able to be cured with medicine once diagnosed, but when I moved 2 years later and was still complaining of stomach pain and gastrointestinal problems, my new Dr. discovered I had gotten rid of the ulcers but now had gall stones.  That was an intense pain, but was relieved by having my gall bladder removed.

When I was 25 I injured a disc in my spine one day while bending over to pick up a blanket, yes...I was simply bending over, nothing in my hands yet, and I felt a sharp pain shoot through my body.  That was the beginning of a very difficult and trying time of my life...that has effects that are still with me 11 years later.  

My back pain began to get better but I began having hip pain that soon stretched from my hip to my pinky toe.  I eventually found out that I had permanent nerve damage in my right leg.  I endured countless treatments, and many surgical procedures.  In the end I now have what is called a spinal neurostimulator which is sewn into my spine and sends electrical impulses to my brain to help to distract it from the pain.  

I could not stand up straight, or walk straight.  I crawled on the floor many times because I could not stand.  I was labeled by my Doctors and Surgeons to be permanently disabled and the likelihood of my working or walking normal again were slim.

To say this was discouraging would be a gross understatement.  You see, I was a single Mom, trying to support myself and my son and I was also a woman who had found much of her identity (in error, but that's another blog) in her work.  This left me with internal struggles as well as practical ones.  I struggled with grief over the loss of the life I thought I would have and the activities that I loved so much that I would never be able to do again.

My prescribed medicines gave me terrible side effects, one of the worst was severe gastrointestinal problems (I had all the symptoms of Crohn's disease but was never diagnosed with anything other than IBS--which I've since learned just means that they don't know.  Again, that's another blog in itself.)  This left me at 108lbs, which for me is very skinny...my bones were sticking out and I had such severe stomach cramping, even after drinking water, that many times I passed out.  

It was horrible beyond horrible...I could not imagine living the rest of my life this way.  At this point of my life I was staying with family to help both physically and financially.  I didn't want to live like this....and I definitely didn't think I could live like this forever.  I struggled to find peace and joy in the midst of my circumstances.

I had never gotten mad at God, but had wondered WHY....WHY ME, WHAT WAS I SUPPOSED TO LEARN FROM THIS, WOULD IT EVER STOP?  

One day, while my son was in school, I was curled up on my bed crying (which I always saved for times when my son was gone) because of what had now become years of severe mind blowing chronic pain.  I was having a little talk with God in my prayers.... 

"God, I know that I keep asking you to heal me, I know I keep asking how long...when will it come, will I ever be 'normal' again, will I ever find a husband to love me (and my son) if I am like this for the rest of my life....BUT God, I get it now, you want me to just TRUST you...plain and simple...no matter how long, no matter 'if' my healing comes in this life, no matter what happens in my personal life, no matter how many more bills I seem to have than money to pay them....NO MATTER WHAT!  So, I SURRENDER!  I SURRENDER!  I see that I keep wanting control of the answers and you want me to have FAITH, so from today forward I will try my best to worry less and TRUST MORE!"

I wish I could tell you that I was healed overnight, I wasn't...but over time I was getting more relief from my implanted neurostimulator and was able (about 2 years after my implant date) to drastically reduce (and eventually totally stop taking) the massive pain medicines that I had been using for years.  And even though the Dr's were all insistent that these medicines were not the cause of my gastrointestinal problems, guess what....about 6 months after terminating their use....I was able to eat more regularly.  I gained enough weight to be healthy again.  And although I was still in pain, it was manageable.

I believe that the beginning of my return to independence started with the prayer I mentioned above.  A year later (now several years since my injury) I had moved back to where I had previously lived, had my own place, had a job, and was once again independent.  I was not pain free, but again...I had new expectations...I wanted only to have pain levels that would still allow me to function.

About 4 months after going back to work, feeling like I was regaining some sense of 'normal', I went to the Dr. because I had been waking up with pretty significant joint pain and having muscle weakness that had caused me twice to fall down the stairs in my home.  I was diagnosed with Lupus...talk about a blow...had I not just gone through several years of terrible pain and agony?  Wasn't I just FINALLY beginning to re-enter society?  

As my Dr. told me the news I could not help but to just cry.  I knew what Lupus was, I have several extended family members with it.  I just stared at the floor as the tears came down and I finally looked at the Dr. and said, "I can't do this again.  It's too much...it's just too much."

Because God is good, I believe that he had led me to this exact Dr. many years prior.  This Dr. has been through all my surgeries and major health problems with me.  This Dr. has a wife with Lupus....he gets it.  I will never forget what he said to me that day, he said, "Jessica, you CAN do this!  It will not be as hard as what you just went through but you will have difficult days, but when they're happening you will have to focus on the fact that they won't last forever.  YOU CAN DO THIS!"  

It has now been 7 years since my diagnosis of Lupus.  I have also racked up a long list of other issues, which include but are not limited to heart problems and rheumatoid arthritis.  There are a lot of secondary issues, which I like to call 'hitchhikers' that like to jump on the bandwagon when you have an autoimmune disease.

I was able to keep working for 6 years, and I no longer work, but I'm remarried and have the job as wife and homeschool teacher.

Because this is so long, I won't go into the 'how' I get through my daily life with nerve damage, Lupus, and all the problems I listed above, but I will tell you this....I'M STILL HERE!  Although I seriously questioned it at times, it is true that God will not give us more than we can handle.  I confess that I was really disappointed that I could 'handle' so much *smile*, but I did, I do, and I am....

I am not without pain, for sure, but I can walk...and they said I wouldn't be doing that.  They said I wouldn't work again, but I did.  My point is this, Doctors do their best to give you a diagnosis and a prognosis that is accurate, but none of them know for sure the plans that God has for you.  Even if they say you will never get better, they may be wrong.  Remember the old saying, "It's always darkest before the dawn."

Philippians 4:13

"I can do all things through Christ who strengthens me."

Just in case you don't read my later posts, I do need to tell you that without my Faith, and even more importantly, my Relationship with Christ, I could never make it through my days!  I believe I would be dead.  I had two times where I almost died in the past 11 years...and I believe that prayer is what kept me alive and sane.

If you can relate to my story...maybe not nerve damage, maybe not lupus, but perhaps you can relate to the pain, the struggle, the wondering how you will make it through...please be encouraged that it is possible.  After almost 3 years of what felt to me like hell on earth, torture, and a breach of the Geneva Conventions by my internal body....I was getting discouraged that if things hadn't changed by then....they never would.  But I was wrong!  (I've never been so happy to be wrong in my life!)

Years ago I had the following quote taped to my computer monitor - "If it's possible, it's probable."  

If it can happen for someone, then why not me?  Why not you?

Psalm 31:24

"Be of good courage, And He shall strengthen your heart, All you who hope in the LORD."

My Invisible Disease.

I have an invisible disease, several actually, but the worst of them all is Lupus.

I've been struggling with a flare up of epic proportions (which is also why I have not been posting a lot recently).  This has made me think of several things, knowing that I am not the only one who suffers with an illness that you can't easily see.

If you have one of the many invisible diseases that sadly plague a large percentage of people, or you love someone who suffers from one or more, you will very likely be able to relate to this post.

For those who aren't familiar, here is a list of some 'invisible' diseases, this is by no means a complete list, however it will give you an idea:

• Anxiety/Panic Disorders
• Autism
• Chronic Fatigue Syndrome
• Chronic Pain
• Coeliac Disease
• Crohn's Disease
• Depression/Psychiatric Disabilities
• Diabetes
• Epilepsy
• Fibromyalgia
• Food Allergies
• Heart Disease
• IBS (Irritable Bowel Syndrome)
• Lupus
• Lyme Disease
• Migraines
• PTSD (Post Traumatic Stress Disorder)
• Rheumatoid Arthritis
  
• Sleep Disorders
• Sjögren's Syndrome
• Ulcerative Colitis

What is an Invisible Disease?

Some may call them a disease, others a disorder, and even others are referred to as a disability or condition, but they all have one thing in common, the person who is afflicted does not easily appear to have anything wrong.  They don't walk with a cane, use a wheelchair, talk with sign language, or use devices to assist them which makes it obvious that something is wrong.  To the average person, they would appear healthy or similar to a person without illness.

Who has these Invisible Diseases?

About 10% of Americans have a medical condition which could be considered an invisible disability.^[1]  Nearly one in two American's (133 Million) has a chronic medical condition of one kind or another.^[1]  Most of these people are not actually disables, as their medical conditions do not impair normal activities.^[1]  96% of people with chronic medical conditions live with a condition that is invisible.  These people do not use a cane or any assistive device and act as if they didn't have a medical condition.^[2]  About a quarter of them have some type of activity limitation, ranging from mild to severe; the remaining 75% are not disabled by their chronic conditions.^[1] lk

  

What is it like?

I cannot answer this question for anyone but myself, but when I was younger, before having any of the physical problems that afflict me today, I was athletic and very active.  Adjusting to a life that cannot include my favorite activities was very difficult.  And even though I am in my 11th year, I still have times of grieving over the activities that I'd like to do but just can't due to either physical limitations or lack of energy.

I look 'normal' and healthy, so I get strange looks at times from people who I assume just think I'm lazy or dramatic.  During church services, I cannot often stand through the entire worship section.  My knees and my hips rebel as I stand gripping the pew in front of me....singing....and often secretly praying that the pastor will instruct everyone to sit.  But on the occasions where he does not, I am forced at some point to sit down when everyone else is still standing.  I see the looks....they look judgmental to me.  I imagine them thinking, "How disrespectful."  "Does she not see everyone else in the entire church (minus a few elderly people) standing?  What's wrong with her?".

Stairs are not easy for me to climb, not because I'm lazy and out of shape, but because my knees, hips, and sometimes muscles fail to comply with my instructions.  And I've fallen more times than I can count (yes, a few times have been down a flight of stairs).  But when I take an elevator, people don't know what is happening on the inside of my body...they see a woman in her mid-thirties that looks healthy.

I have to make daily decisions that most people take for granted.  Chores have to be split, as doing more than one or two in a day will cause me to pay the following day.  I can't stand at the counter to put my make-up on, for many years now I've put it on while sitting down with a hand held mirror.  Hair styles have to be maintained without a lot of standing time.  Showers need to happen in the evening usually because I don't have the energy to shower and put on make-up or brush/fix my hair without a break in between.

My Doctors and my husband have encouraged me to get a handicapped sticker for my car (and to use the motorized scooters in the stores) because it isn't always easy for me to walk through a store....and yet my pride stops me because I already get enough weird stares, I can only imagine what people will think when they see me getting out of a car in a handicapped spot.

Activities for my son are limited.  He can't play 2 sports at once, and sometimes we can't even play 2 in a row...because the constant driving and traveling to practice and games, wears me out.  I hate that!  Events that happen across town are often out of the questions, unless someone helps with driving.  (I have a wonderful friend who for a long time split driving to golf practice with me!  She'd take the kids, I'd pick them up and take them home....if she hadn't have offered this, my son wouldn't have been able to golf!)

Time with friends is limited.  I can't have energy for my family and my friends...I usually have to choose one activity or the other.  A quick morning coffee break isn't so easy since my body screams in pain for the first 2 hours after waking.  Moving is a challenge early on in the day.  I've often said that I wake up feeling like the Tin Man....with rusty joints and needing some oil. 

I like to be outside, activity and sun are good for most...but I have to find the fine line between enough and too much.  Too much sun will make me sick, even to the point of vomiting with a Lupus flare up.  You will often find me in the shade.  Too much activity can make my joints inflamed and my muscles and connective tissue irritated, which can make it hard for me to walk or move for several days.

I am in a great deal of pain on a regular basis, still trying to go about my day like everyone else.  Attending schooling events, going grocery shopping, worshiping at church, praying with others at Bible Study....smiling, even though I hurt.  You may catch the occasional grimace, but I'm usually pretty good at keeping it inside.  

I feel, as many like me do, that no one understands what it is like to live everyday in pain.  A good day is not a day without pain, I cannot even recall the last day without pain, a good day is a day where my pain is manageable. I have learned to adjust my expectations.

What can I do for someone with an Invisible Diseases?

Try to be understanding the next time you see someone who may look 'fine' or 'normal' who is using the elevator instead of the stairs, who's sitting during worship at church, who is parking in the handicapped spot, who's using a scooter at the grocery store.

If you know someone has one of these conditions, offer prayer and support, give compassion, if you're going somewhere together...walk a little slower, and if you are led....help in practical ways.  Help them grocery shop, mow the lawn, keep in contact because it is a daily battle.   

I've had many surgeries, but one that I had last year was known to my Bible Study group and friends.  For a couple weeks I had a meal delivered every couple days after surgery.  It was wonderful!  People sent cards, called asking how I was doing, and really blessed me as I recovered.  This was the most that had ever been done for me out of all my surgical procedures (which is somewhere around 12-15...I've lost count).  This was so beautiful and helpful, and yet....what about the other procedures?  What about the times I miss church, miss school functions, miss an outing with my girlfriends, or even a family day?  

Sadly my condition will not get better like the flu or go away eventually like the chicken pox.  Without divine healing from God, I will continue to have this for the rest of my life.  Just try to imagine being sick that long.  Just try to imagine how discouraging that would be at times.  Put yourself in someone else's shoes just for a while, then maybe you will know how to help.

Due to Grandparents, I had learned compassion for their needs as they grew older and their bodies were deteriorating, causing them pain.  I never imagined that at 25 I would begin experiencing problems which I thought I would have at least another 30 years before dealing with.

How do you cope?

I pray a lot!  God has been my refuge and strength.  I've cried, been angry, been depressed, told Him it isn't fair, and even thrown a temper tantrum or two while praying (not my finest moment, but real none-the-less).  And just like the old 'Footprints in the Sand' poem says, when I was the weakest, He carried me.

That is how I get through each day, sometimes having to focus on getting through each hour....Jesus.

My friends are a blessing, and so many times I've seen them being the hands and feet of Jesus, bringing encouragement, love, and acceptance.  

Parents, Siblings, my Husband, my Son, and other family give their love, prayers, and support, but none of them meet all my needs.  None of them hear every cry, count every tear....None but Jesus.  He is the One and only that I know will never leave me or forsake me!  

He is how.....I live, He is how I can still find joy, He is how I can find the resources to love others in spite of myself.....He is how!   

If you struggle with or suffer from an invisible condition, I pray that you feel encouraged to know that you are not alone!  May the God of Perfect Peace be with you, giving you Joy and Gladness, Hope and Thanksgiving...right in the midst of your pain!

I don't want to close without saying that i don't think you should ever stop praying for healing!  God tells us to continue asking....in faith!  So, I will continue asking and believing for healing...either until I am healed or I am in Heaven!

There is a good story that explains what it is like to live with Lupus, Fibromyalgia, Chronic Fatigue (or many of the diseases on the list above).  It's called the 'Spoon Theory'  it has helped me to explain my situation to friends and family in a way that is easier to understand.

 http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

Footnotes

1. "Chronic Conditions: Making the Case for Ongoing Care". Chronic Care in America: A 21st Century Challenge, a study of the Robert Wood Johnson Foundation & Partnership for Solutions: Johns Hopkins University, Baltimore, MD for the Robert Wood Johnson Foundation (September 2004 Update).
2. 2002 US Census Bureau

Miracle Baby Video

I just watched this video on the internet and decided to share it because it is such a wonderful reminder and comfort to know that GOD IS STILL IN THE BUSINESS OF MIRACLES!

Kelsey the Miracle Baby

Let's try to remember this little girl the next time we are worried and think something is too big for God to fix.  Let us remember that today and every day from here on out that God can win over death itself.

Praise be to God!

Amazing Fellowship

I am blessed to have a wonderful group of women friends....this top photo is only a small portion from my Tuesday night Bible Study group.  We are women of different ages, different denominations, different marital status', and different personalities, and yet we all fit!

I am also blessed with another group of friends, which come from other sources....be it parents I met while my son was playing a sport or in a club, or women I met from working with them.  I am blessed BEYOND BEYOND in the realm of women friends.   I wish I could post a photo of every one of them....but surely some will threaten my life if I posted photos without their permission.  I'm already walking a line with the one at the top...because we women can be so picky about these things.  Ha!  (I only know because I spent a whole day after my wedding crying over photos that people had posted to Facebook which I thought looked terrible and I was pretty sure I just wanted to die....yes vain...yes terribly ridiculous...and yes....true.  So Sad really!)

Ok, back on track.....I have been feeling the loss of my fellowship of friends since having surgery.  I haven't been attending church, going to Bible Study, or even being in the same sort of regular contact that I normally am with my friends.  I miss them....AND....I miss the way God uses us to lift up and inspire, encourage and admonish, love and support one another!

I had a friend call me this last week.  She knew that my throat was hurting since surgery, so she called and said right after my 'Hello'...."I know your throat hurts, don't say anything...I just want to pray for you!"  How awesome is that right!?!?  This friend is battling heart wrenching trials of her own, but this is how I believe God designed us, especially as women....to minister to each other in a way that we understand.  The way that a man might call touchy feely.

I had another friend who took me out, as I was not ready to drive yet, to shop for a Birthday gift for my husband....I had been having some rough days....and as we stood in the card isle we laughed so hard that I was crying and was seriously beginning to worry that I might wet my pants....she was bringing me the funniest cards.  They didn't pertain to my husband's Birthday, but they were funny and we both needed a good laugh!  We felt like it was good medicine!  I felt like a school girl laughing with my best friend over something secretly funny to only us....and truth be told, if I were to show you the cards we laughed so hard at the other day....they might not even seem funny now.  But in that moment they sure did, and I think that God knew that we both needed a good laugh!

I have been blessed with phone calls and messages from Alaska, to Canada, Hawaii, and local friends lifting me in prayer and offering words of encouragement.  

Though I have walked through many trials, God has been FAITHFUL to bring along those to encourage me in my journey.  

Friendship is a blessing, and tough times show you just who your true friends are....the ones to walk through thick and thin....who show up when life gets ugly and standing beside you isn't like a trip to Disneyland.  I believe that God teaches me how to be a better friend myself by the examples of friendship around me. 

I think the old saying is true, 'if you want to find a good friend, you must first learn to BE a good friend.'  I'm not sure who said that or where it came from, but I believe it to be true.

Who might you be able to encourage today?  I'm inspired to bless someone....how about you?

THANK YOU TO MY FRIENDS WHO CONTINUE TO FAITHFULLY STAND BESIDE ME AND LIFT ME IN PRAYER! 

I would love to hear your ideas of how to bless and encourage others.  We might just spark a movement of blessing...sort of like doing the 'wave' at a baseball game.  (do they still even do that?)

May God bless YOU with a friend that is handpicked by God to be a great blessing and encouragement! 

Prayer for Surgery

It is time for me to have yet another surgery, and although I have them a little more frequently than the average person, they can still be a little scary.  All the unknowns.

I used to work with Doctors, so I know that they are regular people just like us.  They have good days and bad days, days that they're distracted and days where they are very focused.  Nurses are of course the same.

Since the care of the Doctors and Nurses is so important in surgery and recovery, I like to pray before surgery (usually the day before) and specifically pray for the staff who will be coming in contact with me in the hospital.  Since I have been doing this (many years now) my surgical procedures have gone much better.  Plus, it's just an extra opportunity to pray for others.

I thought I would share a sample of what one of my pre-surgery prayers looks like.

"Lord, today I am asking for Your protection as I get ready to go in for surgery.  I ask that you would help the Doctors, Nurses, and Staff that will be involved with my surgery to get a full and peaceful night's rest.  I ask that they would be free from relational tension or life circumstances that could cause them to be upset or distracted during my surgery.  Please help them to have a great morning, that they would wake up and feel great, that their minds would be sharp and they would be in a good mood.  I ask that you oversee the preparation of the surgery room, place all the tools and equipment that you know are going to be needed in the right places where they can be easily found when required.  I ask that you would cause anyone who is sick or carrying any sort of bacteria or disease to go home or leave the hospital.  Please give wisdom, discernment, and compassion to the medical staff and help them to remember that I'm not just a numbered surgery but a real person with emotions.  Guide each step that my surgeon takes, let his hands follow your Will.  I ask that my recovery will go smoothly without sickness, infection, or anxiety.  Assist my body to heal quickly and completely and help me to be patient and to rest during that time.  Please bless the staff that are involved with my time in the hospital, for the years they gave to be educated and their dedication to serving others.  I ask that you would give me Your perfect Peace and help me to remember at ALL times that you are the greatest Physician of ALL!  Thank you for being with me on the mountain tops and carrying me through the valley's.  In Jesus name, Amen."