Saturday, April 20, 2013

What is Lupus - To Me?


Here I sit in my living room. The lights are off and the front door is propped open. It's quiet. Such a nice sound. JJ's down in the yard playing. This is a normal thing. But it's still amazes me how I can never let my kids play outside alone for very long without feeling anxiety. That must come from my years and years of being a babysitter and nanny. Letting the kids out of my sight was not an option. It's interesting how some things just carry over. Anyway, Leif has Jakob and Caleb out in the hills with his parents and some friends shooting guns. I usually go with them. But not today. I just wish I had the strength to enjoy my life. To go forth and do. Too often I'm not able.

Yesterday the boys and Leif were all playing outside with their new Nerf laser guns. Jakob actually stopped and tried to get me to come and play. Truth is, I would have loved it. And sometimes I just push through the yuck and go out and play. But sometimes pushing isn't an option.

Sometimes my head hurts so bad I honestly worry that my eyes might dislodge. Such a lovely image, I know. Other times it makes me a little queasy. Most of the time it just hurts really bad and I go until I have to stop and cover my eyes with something that blocks the light. I feel like I am constantly monitoring what medication I have taken - need to take - or can't take.

My throat is raw. The sores have rotated locations throughout my throat and mouth for a few weeks. I've stopped counting. It hurts! Think Strep Throat that doesn't go away. And then take away all medication options (because it isn't a virus or bacteria or fungus).Last night I finally had a possible breakthrough idea. I lathered my throat and lips in Hydrocortisone cream (steroidal). This morning they felt a little better. Here's hoping. I've found that this helps with the rash on my face too. Always nice to find something that helps.

Weak. My body is weak. The combination of fatigue-pain-and fluid retention creates a weakness that is wearisome.

Have you every had to use a blow dryer set on high to get your feet to warm up? I have. At least once every day my feet become so cold that I am forced to stop and warm them. I have found that a blow dryer or a bowl of hot water works best. And then I usually realize that my hands have been as cold as my feet. Lovely!

I have things to do. So Much To Do!! We are supposed to move across the country in one month. How I wish I could do all of the packing and organizing that my heart and mind desires. Instead, I set the goal to pack at least one box every day and I celebrate if I am able to do more. Thanks Heavens (truly) for Leif's strength, motivation, and availability that makes it possible for him to do more then me. We would be lost without these blessings.

Well, there you have it. A little cry fest right from my very fingertips. Now I must leave you and close my eyes. Thank you for loving me through my weakness.

Friday, April 19, 2013

Lupus and Sensory Processing Disorder Don't Mix

I was published on SPDbloggerNetwork.com

I woke up this morning to the rambunctious sounds of my little men bouncing off the walls and into each other, with the under current tones of prodding reminders from my Knight in Shining Armor husband trying for all he is worth to keep the boys on some semblance of routine as they try to get out the door for school. I slept through the moment of waking.

It’s one of those mornings. The kind that requires medication and slow movement as I climb out of my soft cozy bed. And even then I’m in a fragile state.  Twenty minutes proves the ability to move around without too much ache. Unfortunately there is more to this flare up. I try to help with the boys. But this type of flare up just compounds to normal issues ten-fold. This one messes with my head. You see, I have Lupus. An autoimmune condition that randomly attacks organs of the body. Today it chose one of the vitals, my brain.

And this is how it plays out: Jakob, 8 years old and diagnosed with SPD is told for the millionth time to go brush his teeth. He has five minutes before he needs to be out the door. He walks into the bathroom as I walk out. I have just checked to make sure there is toothpaste and a toothbrush in the tin. Somehow I know that he isn’t going to see them. This is where my struggle started. I should have just gone in to ensure that he would see them and encourage him calmly to keep looking if he didn’t. He battles classic SPD where sometimes he just can’t see what’s right in front of him. Instead I chose to forfeit all reason and stew within my mind how frustrating “he” is and how this task should be so reasonable at his age… And amidst this three second train of thought he exits the bathroom asking where the toothbrush and toothpaste is. Enters Lupus Brain: Loud and with as much adolescent  irrationality as remotely possible, the raging mama bear responds “It’s in the tin on top of the toilet! Right where it is EVERY time you go into the bathroom! SeRiOuSLy…!” Naturally he gets defensive. Then reality clicks and I look at my poor husband, a look of sadness in his eyes.  With that I yell, ” I can’t handle this!”  -Uhh, yeah, ya think’!-  He takes over and I climb back in bed. Uggg!

Somehow I manage to get myself together enough to attempt to help again. They’re running late. This time I try to take on Caleb 4 year old. I need to get him grounded enough that he will be able to function at school. I go to the fridge and pull out the Bach Rescue Remedy drops. We sit on the couch together and I calmly remind him that he needs to find his space today. I remind him that he needs to find his teachers voice and follow what she says. It seems to be clicking. Surely the drops will help as well. He walks away calm enough that I have hope as I turn to help his older brother tie up those cursed shoes.  Again I allow myself to wonder why this has to be such a difficult task. Just as we are getting past the initial frustration and reluctance to even try, Caleb walks back in the room and without warning smacks Jakob up side the head. “ARE YOU SERIOUS!?”  Papa scoops up Caleb and takes him to his room until Jakob is out of the house.  With Jakob  curled up on the couch sobbing. Again I let myself think “how old is he!?” But at the same time I feel empathy and understanding of the situation and we work together to get his shoes on and tied.  Finally we get Jakob out the door.

Now it’s Caleb’s turn to leave for school. I gather his little ball of energy into my arms again and remind him of his space. Calmly I rub his Serenity doTerra essential oil on his back and behind his ears. With that he begins to kiss everything and everyone around him. “Do we kiss our friends Caleb?” I ask, knowing that his kisses weird out his classmates and sometimes even the teachers. “No.”  ”Who can we kiss Caleb?” “I can kiss you, Papa, or myself” comes his reply, in between kisses to the whiteboard on the wall. Lovely. “Caleb, if you feel the need to kiss something you can kiss your arm at school, ok?”  ”OK.”  With that I turn to Leif and tell him to let Caleb’s teachers know that Caleb’s big need lately has been to kiss things, and the trigger word for Caleb is, “arm.” They’ll know what I mean, I assure as they walk out the door.

Truly, this morning was one for the record!  FYI: Lupus and SPD Don’t Mix!!

Sunday, April 14, 2013

A Little Update

WOW! It's hard to believe that we're under one month on our count down to Leif's graduation from the nursing program. So many days - so many stories - so quickly passed! Truly, I am in awe at how fast the time has flown. There were few easy days. But many good days. And several hard days. And every day I have been carried or my burdens have been lightened. Of this, I have no doubt!

My life is not easy. I know, that is a pretty lame statement. Who's life is easy, right?  Well, for lack of better words at the moment I chose those words. Simply because they are true.  I wish I could have and would have written daily during this past year. But unfortunately, many of the days I just couldn't. I have started to get headaches on a daily basis. Many times they are aggravated by the computer screen. Reading has become an issue as well. I'm hoping to overcome these obstacles. But I thought I'd share the reality in the meantime.

My health has become an all encompassing issue these days. If you know me, or read through my blog at all you will catch on to the fact that this isn't unusual. Being sick takes it's toll after a while. Leif and I had a good talk the other day about my life and my health and how it all works together. Sometimes (understandably so) Leif gets overwhelmed with all of the symptoms of illness and my desire to define them and fix them. Gratefully (so very gratefully) Leif has been blessed with health and strength. He is rarely sick, and when he is, he struggles. During this particular conversation I asked Leif to take some time to think about what he feels when he is sick. And then to imagine feeling that way every day for years. I added that some months, weeks, and days are better or worse then others. But he could never feel strong enough. Could never feel completely whole. And then I added to the imagination that he still had to meet all of his responsibilities. All of his chores had to get done. And the family was still relying on him to care for them.  Truthfully, Leif didn't really require the visual in order to understand. Thank Heavens he didn't ask me to walk the last several years in his shoes. I may have just gone out to dig a hole for myself. The poor man has to deal with all of his stresses and then he's stuck with a chronically ill wife on top of that.

I don't even know why I'm carrying on about this. I guess just to give an update. But I have to quite soon. My eyes are starting to throb. So let's turn this in to bullet points:

LEIF:
Has done Very well in his schooling!
Is enjoying his clinical time in the hospital three days each week.
Is looking forward to graduating and moving on to start his career.
Spends the days that he's not at the hospital working with Lena to pack up and prepare for the move.

LENA: Ideally,
Spends 1/3 of her time caring for the family and home
1/3 of her time organizing and packing
1/3 of her time resting and sleeping
At this point, the conclusion between the doctor and Leif/Lena is that Lupus is the illness; along with the Pituitary tumors, etc.

JAKOB:
Is doing very well in school and has a wonderful teacher!
Still Loves to learn all that he possibly can about history and science.
Looks forward to the move (most of the time.)

CALEB:
Has progressed Leaps and Bounds this year while attending Head Start Preschool.
Loves all Might Machines (construction equipment)
Loves being with Jakob.
Just turned 5 years old!

JJ:
Is growing up Way Too Fast! My little baby is a little boy!
Is a smart little man!
Has a priceless smile and laugh!
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