Lupus.

4 Jul

Okay, I am gonna ramble.  I am not trying to sound witty or make this even make sense.  I am just getting my thoughts on a page.

Going back to the beginning….

I was young when I started feeling like I was not “normal.”  And I’m not.  I have always been weird  🙂  I always had stomach aches and head aches and fatigue.  Had horrible food and environmental allergies finally found in middle school.  I also started having joint pain in my knees. In college, I started having weird panic type attacks.  I would feel my brain go fuzzy and would not know where I was.  Early in my 20’s I was diagnosed with endometriosis and had a tumor removed (benign) from an ovary.  Mid twenties, started suffering from depression.  Late twenties, had massive amounts of blood in my urine.  This lasted 4 months or so, on and off.  Had a biopsy of my kidney. My nephrologist called it a mystery.  By the time I was thirty, depression was back, along with panic attacks.  Knee probs continued. But then something new started.  I started getting fevers that would come and stay for months.  My family would all get bugs and I would never feel better.  I started needing more rest and felt tired.  Everyone told me that it was just this stage of life.  And that it was not really “fever” just hot outside.  But I knew…my eyes burned and I FELT feverish.  I exercise like crazy, but keep extra weight on.  All the while, I am on stomach meds b/c my poor tummy can’t seem to feel better…no matter how I eat.  I have also had other random things: a fuzzy brain when I order things at a restaurant, I get ulcers in my nose that doctors told me where nothing.

Periodically, I would go to doctors and get them to see what was going on.  One of the many times I was found to be anemic, a gi doc searched me inside and out to see if I was bleeding anywhere.  Nope.  A urologist checked me out.  All fine.  A psychiatrist had me on a whole host of things until I threw in the towel and walked away from it all.  I do remain on a tiny amount of an antidepressant.

A year and a half ago, the fevers and anemia made them search deeper.  I ended up at a hematologist.  She felt like I had a virus that was just taking months to be fought off.  I had elevated white blood cells then, as well.

In all of this, I have lived a VERY active life.  I part-time homeschool, teach 5 exercise classes a week, am a wife, a mom, a cook, a cleaner, and love my family and friends to pieces.  I have also run a half marathon and two mini triathlons.  It is amazingly true when God tells us that when we are weak, then we are strong. I have never relied more on Him.  And never accomplished more.

Everything changed a few weeks ago.  I went BACK to the doc for the gazillionth time for fevers that don’t go away.  Finally!  Something shows up in my blood!  I have the marker for an autoimmune disease and it has the characteristics of Lupus.  Then last week, I changed docs again b/c my first one made some questionable choices.  This new doc did a deeper dig in my bloodwork and ran some more tests.  I also had an anti double stranded DNA thingy found in my blood.  Another tell tale sign of Lupus. That and the many symptoms, lead the docs to believe this is what I have.  I go to a rheumatologist in a month to get more confirmation and tests and a treatment plan.

In the meantime, I sleep a LOT.  Pretty much, don’t call between 2 and 4.  I won’t answer. I still have fever every day.  I can make it just fine until lunch time and then crash until I nap. I can then wake myself up enough for a semi normal dinner time.  Then I crash again on the couch until I crawl to bed.

I really can’t wait for this time to pass.  Lupus flares.  I am definitely in one.  Achy joints, total fatigue, fever, and a whole bunch of other stuff.

But we, as a family, are fighting this. I am going to learn how to fight naturally.  I am going to see if I need meds (hopefully not…but Lupus can attack your organs. so if I must medicate, I will).  I am taking supplements that should help.  I am exercising like always and still teaching all 5 classes. I am taking naps daily and saying no to just about everything.  Sweet Luck is carrying my load right now.  He reminds me that a lot of what I do is not vital to our lives and gently nudges me to let things go.  He makes me rest when I want to be up.  He has taken over some of the jobs I have always done (folding/putting away laundry, making lunches, doing dishes).  But more than anything, he has reassured me that by my side is still his favorite place to be.  I told him that he better have meant that whole, “In sickness and in health” part….and he laughed and said, “I knew EXACTLY what I was getting myself in to.  I know YOU!  Did you think I would think you were NOT going to have weird medical stuff?”  He and I have laughed a lot through this.  Me sitting at the top of the stairs b/c I am too tired to come down or my joints hurt too much.  We have found that laughing at it all is fun.

And so the journey begins……….

I am NOT a writer.  But I have lots of people asking me questions.  I cook a lot and have recipes to share.  I want to figure out life with Lupus, naturally.  And I am on a journey that I am not keeping secret.  So far, it has been a joy to be on this journey.  A life leaning on the Lord.  Who could ask for more?  I do have bad days and I cry a lot.  But when a caterpillar is in the chrysalis and is fighting it’s way out, it needs to struggle.  If you help it out and it does not have to fight it’s way out, it’s wings won’t be strong enough to fly.  I am in that cocoon.  I am fighting.  And I will emerge with wings strong enough to fly. 

James 1:  2Consider it pure joy, my brothers, whenever you face trials of many kinds, 3because you know that the testing of your faith develops perseverance. 4Perseverance must finish its work so that you may be mature and complete, not lacking anything.

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