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)

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."

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!

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."