Tuesday, July 15, 2014

The Post I Didn't Want to Write

March 2014

Part of me has kept hoping that if I don't write this post, that it's not true.  Yet, time and doctors appointments march on and truth is truth whether I want to write it down or not.

Nathan is not doing well.

There.  I said it.  His last several test for macular degeneration have all be successively bad news.  It is as inexplicable and the good news from 9 months ago.

In January, Nathan had a 6 month follow up appointment along with Emma and Annika.  Emma's eye checked out great.  Dr. Cory thought Annika was in good shape as well.  But Nathan was dramatically worse. Dramatically.

I called our pediatrician, who is also a dear friend.  We increased Nate's meds by 50%.  And waited for two months.  March 4th was reckoning day.  I brought Nathan and Annika in for appointments.  Annika was decidedly doing better, but for Nate it was as if we'd done absolutely nothing.

******

July 2014

My goal when I began writing this post months ago was to go into detail on a somewhat scary, but necessary procedure that my retinal specialist thinks will help.  Despite the tone of opening of this post, I felt incredibly calm about the whole thing.  And was somewhat, un-rushed about pursuing the additional procedure which we cannot seem to get insurance approval for. (Something about Nathan not being able to have "age-related" macular degeneration at 11.  While that fact is technically true, it's the only diagnosis that matches his symptoms.)

Meanwhile, Nathan has now had two appointments with more inexplicable good news.  But it's not quite good enough.  And Nate still needs the expensive PDT and we've made no headway with the insurance.

So we've set a date in Sept.  If the insurance won't pay, Wendell and I will pay out-of-pocket (possibly with some family help) and the doctor will donate his time and laser so we can just Get The Thing Done.

The doctor is quite confident it will help.  Still, we both (the doctor and I) recognize that we are using Nate as a guinea pig because of his age (older than Annika)
, situation and having and eye to give.  (Unlike Emma, who only has one good eye.) Which isn't exactly the kind of thing that makes a mom comfortable.

One the flip side, if we don't do this procedure and he gets huge lesions in both eyes.  Well, that's not a good option either.

It's a weird place to sit, with no easy answers, but a decision that must be made.  And regardless of the outcome, there will be consequences to be paid.




Tuesday, January 07, 2014

The Hospital?

"I don't know what to do with you, " the nurse told me.  "I'm on the fence."

"What are you thinking I should do?" I asked.

"Well, I might want you to go to the hospital..."

****

It was Saturday Dec 28th when I started feeling a pressure in my chest.  Like a tightening over my heart.  I gave myself my weekly methotrexate injection and went to bed.  In the morning, I felt better. By the evening of the 29th, though, the pressure was back again.  And went on into the night.

Annika had a nightmare and I tried to get her back to sleep.  My heart started racing even though she hadn't scared me.  It was 5:30 AM and I struggled to get back to sleep.

When I got up Monday morning, the pressure was still there.  Like a giant was pushing on my chest until the pain started to seep into my shoulder blade.  Although I had checked online and found that I wasn't having a heart attack, I also couldn't stop the pain or even figure out why I was in pain.

I called my favorite clinic.  I no longer have a doctor there because she defected to the BYU Health Center, but I felt confident in the staff and tried to get an appointment.  They put me through to the nurse.  She found my case puzzling.

We talked about my family history of heart disease, including my dad's recent heart attacks and subsequent surgery.  That seemed to make up her mind.

"Go to the ER.  They have the best equipment.  They can tell you what's going on."

Over breakfast with my kids, I told them about the pressure in my chest.  I told them that a nurse thought I should go to the ER.  I took a shower, got dressed, packed my laptop, a book and my contact and glasses cases and drove myself to the ER.

I called Wendell, told him what was going on and convinced him not to meet me there.

"I promise I'll call if anything gets interesting," I told him.

At the ER they took my blood pressure, ran some blood tests, an EKG and took a chest X-ray.

"On paper," the doc told me, "you look great.  We could do a CAT scan to be sure."  I explained that I had an aversion to CAT scans.

"What I think you have, is inflammation that's causing pressure in your chest."

"Oh!  From my arthritis?"  I'm very familiar with inflammation.

"Probably not," he said, drawing out the phrase like he was politely considering it.

I figured he'd tell me it was my lack of exercise or my over-eating.  But what he said was, "Take care of yourself."  And he tipped his head in a way that was simultaneously sincere and gentle.

After I left the hospital, I read over the paperwork.  The diagnosis on paper cited stress as the most likely cause of the inflammation.  I was having a physiological response to stress.  And there on Monday Dec 30th, in the hospital parking lot, I knew things had to change.  So I began to think a lot about my goals, my aspirations, my joys and how I want to spend my time.  Because, believe me, I do not want to be in the hospital parking lot at the end of 2014 because of stress. It's time to revamp.

Monday, January 06, 2014

Reviewing 2013

I sincerely apologize for keeping my goals posted on this blog, but it's such a great (and easy way) for me to find them.

Part of me feels really sad when I look at my goals from January of 2013, especially with what happened just a couple of days later.

I didn't write about family history.
I didn't lose weight.
I worked on the organization but with pretty marginal success.
I did get more clients!  In fact by the end of 2013, I was running around like a chicken with my head cut off because I had so much to do.
I did get a new calling.  (I'm now in the 2nd Counselor in the Primary.)

I've been taking my sweet time as I think about my next year's goals.  What do I want to achieve?  What is valuable?  How much of anything is too much?