Joshua 10:25

“Do not be afraid; do not be discouraged. Be strong and courageous." Joshua 10:25

It's summer! I made the year, one of the hardest years of my life. You know when you are faced with health issues you see the world through different eyes. For so long I felt as I was hovering over my body. There were days I would think am I really walking in this body. I am now at a point to where I know this is reality and I have to fight this battle. I found this verse a couple months ago and it just hit me, that God didn't leave me on the worst day and he won't leave me now. He was carrying me when I felt the worst, when I felt I was hovering. I praise him on the best days and the worst, because it is one more day with my babies. All of this is for him! I was meant to have this for some reason. I don't question him I praise him. I pray everyday for those that are fighting bigger battles and I pray God carries you as well.


It has been four months since I have last updated. I went to see Dr. Chou in May and he was impressed where I was with my Lupus. After feeding one vampire this time, all my labs had improved some. The inflammation in my body had slowed down and was mild. I am now at a time where I am finding out what I can eat and do without slowing down my body. For example, sugar and bread slow my muscles down and I end up in pain. I see him again in August. I do a lot of reading and research on this. I don't like to be surprised so I usually go in with tons of questions and he laughs and says, "so you have been reading." Not sure if that is good or bad. LOL


I am struggling with extreme fatigue right now. It's very hard for myself as well as my family to understand why I am so tired. Some days I can run a marathon and others I can barely raise my arm and keep my eyes open. It makes me very angry and depressed. Dizziness is another thing I struggle with. It has gotten worse over this month so I plan to ask him about that.


I have started walking a couple times a week on my treadmill. Dr. Chou said it was very important to keep my muscles working and walking was the best thing I could do. He advised me to start out at 10 min. 3 times a week. By the third night I can usually do 30 minutes. So I hope this helps me improve and feel better.


My family and I are planning on going to Panama City in July and I am so looking forward to that. I know it isn't what is recommended but I will not loose myself nor my family with this disease. I just have to move slower and rest a lot. But I absolutely can't wait to lay in my chair with my book and fall asleep with the waves. As Luke says, "It's paradise on earth."


Again, thank you all for the messages of love and hope and prayer. I truly couldn't be on this journey without my family, friends and prayers. For all of you with your own battles remember, “Do not be afraid; do not be discouraged. Be strong and courageous." Joshua 10:25.

I will be praying for you all. For all of you struggling I hope just like myself you will praise good days and survive rough days and continue on this crazy journey we call life.

March Update...

It has been two months since I last updated.  I appreciate all the messages from many of you.  I have tried to answer all but I will be honest there are days I just can't do one more thing.  So hopefully this blog will help.

I have seen the doctor, and fed a vampire, since January.  I had to stop taking the steroids since they were not working on the inflammation.  My lab worked showed no decrease in my levels.  Dr. Chou upped my Lyrica to help with the pain.  Since doing that I have seen the pain decrease and have even had days with no pain.  On the next visit, I will feed another vampire, and evaluate my meds and see if the Plaquenil and Lyrica has helped.

Several of you have asked, "How do I truly feel?"  And I appreciate your concern, however I still have good days, bad days and dreadful days.  I was so glad to see Spring Break.  I honestly don't think I could have made another day.  And I didn't mind the rain!  It took me three days staying in bed or on the couch until I felt better.  The fatigue is like no other.  I truly don't know how to describe it. The words sleepy or tired are no longer what I consider fatigue to be.  I would love to be just tired. Those are things that a two hour nap, or eight hours of sleep can fix.  This week I have ached more than the last weeks.  So I am throwing that up to maybe the weather?

Also, because I am high anemic I crave ice.  It's called Pica. Pica is a disorder in which you crave and eat non-food items.  And when I say crave ice, I mean like a food.  I no longer eat sugar, and I have always been a huge chocolate lover.  Nope I would rather have ice than chocolate.  Crazy I know!

Back to "How do I truly feel?"  I don't know.  I still feel numb to this whole thing.  I have always been on the go, a never slowing down person.  Now I have to look at my schedule for the week and save up energy for whatever is happening.  I love this season.  I love digging in the dirt, and cleaning up our place from winter.  I don't know if I can do all of that.  It almost feels like I hoover over head and I am watching all of this.  I read anything I can get my hands on about this disease.  I answer this question with "I'm good."  Because I don't know?

However, knowing all of that I smile and push on.  I will not whine over how I feel.  I will not frown over how I feel.  I come from strong women and I am trying to develop one.  There are people that are less fortunate.  The end of March and all of April are exciting months.  We have Ag shows, county fair and my baby turns 13!  Yes I will have a pre-teen!  I have to keep moving because he isn't stopping.

So thank you to all my sweet friends and family that help me out.
I will praise good days and survive rough days and continue on this crazy journey we call life.

The Answer Please...

Today was the day for answers!  Mom and I began this journey at 6:30 this morning to meet with Dr. Chou at 8.  After two long months of not knowing what is going on with my body I have learned I do have Lupus.  I have learned more about this five letter word than I ever imagined or wanted to.  Yet the sad truth is we still don't know everything.  It is such a mysterious disease with NO CURE. That's right NO CURE!  Can it be managed? YES  Do we know what causes it?  NO  Does it look the same in anyone's body?  NO  Do I know when I will have another flare?  NO  Will this treatment work?  DON'T KNOW

However, this is what I have learned...

     According to the Lupus Foundation of America,  Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years.

In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs ("foreign invaders," like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues ("auto" means "self") and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better)."

My treatment as of tomorrow morning for one month I will be on Predisone and Plaquenil twice a day.  Our hope is that the Predisone will take care of the inflammation in my body and in a month I can be off of that.  Plaquenil is something I might always be on, it is a drug for Lupus.  The great news I have began this road to healing.  The bad news both of these medicines can lead to even more.  LOL  But I have told myself one day at a time.  At this point in this journey, I can't worry about the future of this disease.  I have to get healthy!  And I will face the next battle when it shows itself.

Tomorrow I will begin this medicine with the hopes in a few days I will feel no pain, no inflammation, no worries about will I be able to move and not being nauseated.  I will praise good days and survive rough days and continue on the crazy journey we call life.

I debated on creating this blog because I have no answers to what is going on in our lives. But the more I am learning, we learn best from each other's personal experiences.  So here I go.... 

I find peace when I am at the beach!  It's one of our highlights of the year when we pack up and leave reality behind.  I love to watch the waves roll in.  The different shades of the water and the millions of shells that come in and out with every wave.   At this point in my life I would love to pack up and leave reality behind....

A couple of weeks before Thanksgiving break,  I went to find our family a new general practitioner and to see why I felt the way I did.  For a year or two I just haven't felt right.  But lately the fatigue is just getting to me.  I had no idea that would change my life.  She sat down and began asking questions that led her to do a full blood workup.  She was concerned about my blood pressure as well and asked me to keep a journal for the next couple of days.  The following Monday would lead us down the road we are on.  Not only did she discover I have high blood pressure, high cholesterol, she noticed my liver enzymes were high along with a few other tests that didn't seem right.  We began discussing why I felt I had gall bladder issues and all the symptoms I had felt for years.  She sat down and told me she felt that I had an auto-immune disease.  Hello what?  I completely blocked anything else she said from then on.  I just came in because of a few little things!  

I left with knowing I would get a call from an Endocrinologist.  She felt it wasn't gall bladder it was my liver causing me the pain along with everything else I was feeling.  I remember getting to the car starring out of the windows.  I immediately spoke to God and asked for his hand on this journey, even though I called my mom I knew it was he that had control over this.

The next week I felt as if I was getting the flu.  My body ached like the flu, I was nauseous, my eyes were terribly blurry and just the movement of my legs and arms felt like a 400 pound person hanging on each.  I laid in bed that whole weekend.  That Monday was the change I had not expected!

The following Monday, I rolled out of bed, literally.  Forced myself to take a shower, put on my clothes the whole time thinking; I have the flu!  I began to dry my hair and the pain in my arms I had never felt.  I became nauseous and called for my daughter to call her nana.  I couldn't move!  Laying in bed I thought what is wrong with me, am I dying?  Any move made me out of breath and nauseous.  Mom drove me to Direct Care and I saw my doctor.  She proceeded to explain that this is an auto immune flare up.  She gave me something for the nausea and we discussed rest is the best thing.

That week I saw the Endocrinologist and he ran more tests.  At this point I had probably had at least 15 blood tests.   He called within days wanting to do a liver biopsy.  He said he needed to figure out if it was the liver causing the inflammation, or the inflammation making the liver inflamed.  The biopsy found that I have a fatty liver and he sent me to a Rhemotoid Specialist.  

That is where we are today, deciding what this is that I have.  I have had 15 more blood tests done and go back the 12th for hopefully the definition of what I have and a treatment plan.  Right now, we are looking at Lupus, Sjogren's Syndrome or Hashimoto's Thyroiditis.  I know Right!!!!  But no matter which or what an auto immune disease is not curable, it can be managed with medicine. However, I will never know when a flare up will come and it could be months or years before I reach remission.  

We strive our whole lives to be normal.  We want normal for our babies as well.  What is normal?  I long for the days that normal was in our home.  I no longer can put Emma in the shower with me and wash her hair and mine.  Taking a shower, getting dressed takes every breath out of me.  When I dry my hair I have to take breaks so my arms don't give out on me.  Walking to the laundry room taking clothes to place in the washer and dryer, wears me out.  The pain all over my body is indescribable. I never imagined that I would say my liver hurts.  LOL  Buying groceries today made me so sick!  I miss the little things we moms do and don't think anything of it.  

Looking back I see things that I can relate to this disease. It all began after I had Luke and from then each year something has happened and now it is here facing me.  Yes I know its not the C word. But when you are looking at your life changing and reading what could happen in years to come its scary.  I have had so many emotions with this.  Some days I can be happy, others sad and most of the time confused.  My brain doesn't think the same way.  I have trouble getting out what I want to say and if you speak to me I won't remember it by the time we are through.  Nausea comes and goes all day and even eating makes my jaws hurt some days.  I have lost 7 pounds in 2 weeks!  Yes that is a great diet plan, but believe me I would have rather not lost it the way I have.  Sleep is no longer a norm.  It takes forever for me to get comfortable and to fall asleep then I pray I at least get 3-4 hours a night. 

If it is Lupus, I know we all know someone that has it.  But that doesn't help.  It's still my life!  It's still a disease that I have!  My life will forever be changed!  Lupus is unexplainable, its a mysterious disease and affects each person differently.  We know it has attacked my liver, but I pray my kidneys are not harmed.  I have so many questions for the next appointment.  But for right now I will keep researching, I will keep answering every question my kids have, I will keep trying to go on.  It is very hard, unimaginable hard! 

So if for nothing else, maybe this blog will be a place I can vent, or a place Luke and Emma can learn from, or a place that can help someone else.  But if you are reading, I ask that you pray for all that suffer from this disease.  Because to be ill is a very lonely place...