Saturday, July 4, 2015

Todays reality

Its the 4th of July, and I'm laying in my room, trying to stay warm in the ice box grant has the house set to.

I'm reading other peoples words, bouncing from blog to blog, searching for something to take my mind away.  But I don't find it.  I don't find my life written anywhere. 

I don't see a woman who is very intelligent, but her body is broken.   No, no, wait, she knows that its unhealthy to call herself broken.  She hope that if she tries really really hard, she will walk without pain. 

There are no other blogs of moms trying so hard to hope.  Trying to eat no gluten, sugar, dairy, grain.  Try to mediate positive feelings so that the cells in her body will heal.
Try to move enough to not loose muscle tone.

Try to rest enough to allow the cells to repair whatever the damage is.  Try to remember all the phrases in the therapists office.  Wait, make that two therapists.  Because this could be Lyme, or the disk that showed up on the MRI, or it could be psychosomatic.  

But incase its just blocked Qi, you go to the acupuncturist too.  Maybe then you can try unlock the hidden trauma that is causing all of this.  So hidden that you don't even know you're hiding it,.says the doctors she placed her trust in. 

What you aren't hiding is the extra weight that Lyrica dragged along.  You see the photos, you try to hide it, but its there.  15 pounds.  Looking like 40 because you are trying to see if a back brace would help the pain.  Trying a back brace means that all your extra curves are mashed in the wrong places.  So you try your husbands clothes.  And you try on earrings to feel less ugly when they fit.

Try with your mind isn't enough try, and try with your food isn't enough.  The alarm on your phone reminds you its time to try more.

  Try to take the magnesium because it could help  muscle spasm, the methylated B-12 to heal, the mood stabilizer to prove its not depression.  Those an a few dozen other pills, shots, patches and drops that might help.  Could help.  Should help.  They had better help. 

So there is trying to remember to take the pills, to take them in the right order and spacing.  Setting alarms, snoozing alarms, getting behind.  

Then déjà vu hits.  And you wonder if you've written this before.  You know you've felt this before.  And you wonder why it seems like you've been here before and before and before again. 

Stuck.  Broken.  Lost.
Hearing life happen just outside the bedroom door. 

But you remember you are trying something in here.  You are trying to get better.  So you write this to remind yourself that you are trying to make a better September.  That you are trying to be walking again when the amazing dahlia garden is still blooming around the block.    That you are trying now so in September you can walk with your daughter when she gets her freshmen year photo done.  That you are trying to.....

Ooo, you remember

...there are no words for the feeling when your heart drops, your toes go empty.  Cold sparkling water dumps on your chest.  Your daughter.  Your beautiful daughter, sunny smile, can do attitude.   Your daughter got a sunburn two weeks ago.  A funny sunburn, only on her nose and cheeks.  And her hands and feet.   Then she left for a week at a BYU youth camp (EFY).  And it didn't go away,  turned into a rash.   she came home, we went to urgent care.  Steroids.  Then Monday.   5 days ago.  We saw the pediatrician. Malar Rash. Lupus. 

Lupus.

Lupus.

And you try to take care of your self and look up doctors.  And look up advocate websites.   And you see your visions of a healthy daughter, getting to be the healthy mother you failed to be...you see it crash.  You see the side effects and you wonder what the future will bring.

Sun, sun, go away.  Lupus rash is here to stay.

And you can't tell anyone because you hear what they say about you.  You feel you must be broken or mentally to have broken children.   does anyone believe you, or believe your kids labels? 

Your therapist said your middle name must be Job. 

But Job didn't have friends who brought meals, drove, send encouraging texts and help.chase the negative thoughts away. 

And and Job didn't have fireworks to  hear and see.  



-Rachel

Thanks.for suffering with bad grammar, confusing auto correct. and.extra.periods....touch.screens are not designed for moms typing with one hand and divided attention. If this is not the.case,its your lucky.day

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