Mis Ojos!

I was sitting in my neurologist’s office last Thursday.  Rachel, her nurse practitioner, was seeing me that day.  I was there to discuss weaning off the calcium-channel blockers that were prescribed to put an end to those dreadful cluster headaches.  Verapamil worked! The cluster headaches stopped, and the drug also reduced my migraine headaches by about 75%! The thought of taking on yet another prescription, however, seemed annoying.  Between Grace and me, we could run a pharmacy out of our home.

My doc was also not satisfied with the MRI results or the ophthalmologist’s notes on the suspected optic neuritis.  I’m going to call him Dr. Charisma for the sake of irony.  My neurologist, therefore, decided to order a blood panel in the form of seven vials of blood being tapped from my arm.  The lab results hadn’t come back yet when I was in the doctor’s office on Thursday so I was put through my neurological paces by Rachel–the drunk walk, the interrogation, etc.

“You have the most sordid neurological history of anyone I’ve ever met.”

“I’ve always been a high achiever.”

“Are you still smelling the burning smell?”

“Like now?” (I have to give my clinicians a hard time every now and again)

“No, not now.  Recently though?”

“Nope.  Although I will say that I have a greater empathy for my daughter.  Olfactory auras smell real.  I was convinced that something was on fire.  I had my entire family searching the house for something that was burning.  I felt very foolish when I realized that it was just an aura.”

“Your daughter? Oh, right.  She has….”

“…a schizophrenia spectrum disorder.  Sometimes she hallucinates.  You know, experiences things that are not real.  After we realized that I was having an olfactory aura, Grace patted me on the knee and said, ‘Don’t worry, Mom.  It happens to me all the time.'”

Rachel stared at me in stunned silence.

“Oh, come on now, Rachel! You’ve gotta lighten up! This is my normal! If you can’t laugh at this stuff, then what? You have to find the funny!”

She did manage to lighten up on Friday when she called me with my lab results.

“Hey, it’s Rachel! I have your monster lab results!” Then, she was quiet.  “Was that too much? After your visit yesterday I thought I could give humor a try.”

I did laugh when she said that.  Look at the NP from my neurologist’s office trying to be funny while delivering test results.  Aaaaaw….

“So, every test was normal except for your ANA.  Those titers were too high for even a false positive.  You are going to the rheumatologist.  We’ll set up a referral.”

Oh boy! So, I don’t have MS! I have…something else.  Hmph.

I felt a little low after Rachel’s call so I decided to give up the ghost and get my eyes examined.  I don’t know why I decided to do that.  It may be that I realized that something was indeed not right in my body, and I needed to stop avoiding the truth.  Also, I really can’t see well.  It all just happened at once.  A month ago I could see quite well.  Currently, I am wearing two pairs of glasses at once in order to see the words on the computer screen, and I still can’t focus well.  I think that means that I need an eye exam.  Grace went with me.  During my eye exam, the doctor stopped, patted my knee, and said with an empathetic sigh, “Your eyes just gave up.”

My eyes just gave up?

“Your eyes just gave up.  They have been trying so hard to focus and do the work of seeing that they finally just stopped trying.  They didn’t have the proper support in the way of the right prescription.  You are going to leave here with a much stronger prescription and…bifocals.”

BIFOCALS!

I don’t know if it was the stress or if I just have a problem, but I started laughing.  I laughed so hard that I nearly fell out of the exam chair.

I tend to think in terms of metaphors.  I am currently unable to focus on anything and subsequently see properly because my eyes gave up.  They lacked the proper support.  I needed a new prescription.

Doesn’t that just feel a bit too much like life? It doesn’t matter who you are or what you’re dealing with; you need the proper supports in place in order to flourish.    We’re supposed to have our eyes checked annually.  I haven’t had my mine checked since 2009.  Why? Well, I put myself at the bottom of the list as do many mothers.  The needs of our husbands and children come before our needs.  I hear many women say, “Oh, I’m fine.  I don’t have time for ________.  I’ll get my mammogram next year.  I’ll get my pap smear later.  I’ll take care of _________ after my kids get their glasses.  They need their glasses more than I need mine.”  I want to ask a question.  Who is going to replace us when we have ignored our own needs so long that we’ve ignored ourselves into a corner?

I really hate to admit it, but that’s what I’ve done.  If I examine myself, then I can come up with some reasons that I’ve neglected to look after myself.  None of them are great, but they’re reasons.  My husband is the same way.  His reasons are about as legitimate as mine.  Not very.  And now my health is very much on the line.  It’s not just about chronic migraines or fibromyalgia.  It’s something else.  It’s an autoimmune problem.  Could this have been prevented? I don’t know, but I can tell you that I would not be wearing two pairs of eyeglasses to see had I taken better care of my eyes.  That is preventable.

I know that it’s difficult to take care of ourselves when we are caregiving, but I encourage you to put in the time and make your own health a priority so that you can ensure that you will continue to be a healthy presence in the lives of those you love.  You can’t care for your loved ones if you aren’t there.  Learn from my mistakes.

Know what I mean?

P.S.

Do any of you see a rheumatologist? What qualities do you look for in a good rheumatologist? Conversely, what qualities do you look for in a bad one?

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8 thoughts on “Mis Ojos!

  1. I go to Erskine Caperton in St. Paul on the recommendation of a neurology PA friend. Luckily I seldom need to go, but he diagnosed me with lupus back in the day, and I definitely recommend him. Good guy.

    • Oh! Thanks! I just got word from my doc. She’s sending me off to some big ol’ practice. I have an appointment in JUNE! First available.

  2. Geeesh! I’m sorry about the bifocals…I’m not sure that much could have been done to prevent that, actually – our eyes just age and deteriorate. At least they make “invisible bifocals” now!!
    So true about putting everyone else first…my back is a mess from picking my niece up three dozen times, on Sunday, against my better judgement…
    But anyway, good luck with the rheum!
    How is Grace, btw?

    • Well, the new development there–she is falling. She is having some kind of spell, and then she just drops to the ground. I was in contact with neurology all weekend, yesterday, and now this morning. We heard her fall about 20 minutes ago. She is disoriented and non-responsive when we find her. We had to take her to her PCP to check her blood pressure, middle ear, etc. She’s fine. So, now we’re back to neurology. Barb the nurse and I are really getting to know one another. They’ve increased one of her anti-convulsants. No joy. I think the doc was hoping it was NOT in her wheel house. But, I think it is. i’m sure a lot of parents would freak out if their kid was dropping to the ground four times a day, but now it’s just a new symptom. And we call and wait. And then she does it again. And we record the time and collect data. I wanted to post something when I actually KNEW something other than “So Grace is falling to the ground and lying there.”

      Sorry about your back. I know that’s an issue for you. I hoe it gets better. BTW, so great to “see’ you!! Miss your blog. xo

  3. LOL, love your humor. When you said you laughed till you almost fell out of your seat, that made me laugh out loud because that is SOOOO me LOL. I have seen 3 or 4 rheumatologists none of which I cared for at all. Options are severely limited when you have state funded health insurance.

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