This Is Ridiculous

I've been having some headaches lately.

And well, my eyes have been buggin' me.

A lot.

So I call the eye doctor's office on Friday and tell them I think I might be having some trouble with my new eyeglass prescription.

I also mention the optic nerve swelling that they discovered at my last visit -- a month and a half ago.

A few hours later, I'm sitting in an exam chair-- face forward, chin and forehead resting against supports.

"Sandra, I don't think the pain you're feeling is coming from your new eyeglasses," Doctor C tells me. "They match your prescription, and you're testing 20/20 while wearing them."

I can't see her face as she says these things-- the room is dark, and she's looking at me through a large microscope-like contraption, while flashing a light into each of my eyes.

After a few moments, she has me lean back and out of the supports so she can put in some anesthetic drops.

"I'm just going to check your pressures."

Soon a bright blue light is moving first toward my right eye, then the left.

"Now, just keep your eye wide open," she says.

But I can't stop myself from blinking that left eye.

"I'm sorry," I tell her, "I really hate it when anything comes near my eyes."

"It's all right, Sandra," she says gently, "you're doing just fine."

After a few more attempts, she finally gets a reading.

"Well, your pressures look good."

Thank. God.

Then she gets up and -- without saying a word -- turns on the light, sits back down in her chair, and starts writing.

Finally, she puts down her pen and turns to face me.

"Sandra, I'm going to schedule an appointment for you with a surgical ophthalmologist."

"Excuse me? ... a what?"

"Your eyes have narrow angles, and we need to have a surgeon assess whether treatment is indicated."

"Narrow angles, wait a minute-- what exactly does that mean?"

"Well, it means the angle between your iris and cornea is narrow-- and I'm afraid that places you at high risk of developing narrow-angle glaucoma-- a disease that can rapidly lead to vision loss."

She then adds quickly:

"But if it's caught early, it's very treatable."

"Caught early- wait-" I stammer, "how is it treated?"

"Using a laser," the doc says calmly, "a surgical ophthalmologist puts a hole in your iris-- this allows the fluid to drain."

"A hole?"

"Yes-- it's very small."

"In my iris."

I try to swallow.

But my mouth is suddenly bone dry.

"Sandra, it's an out-patient procedure that is very straight forward."

"Doctor C," I begin, my voice a little shaky, "do you remember when I tried to do contacts a few years ago? When I failed miserably because I just COULD NOT STAND anything touching my eyes. Well, the idea of a laser scares the hell out of me."

"Don't worry-- really."

"Is there any other treatment for this-- like drops?" I ask, helplessly.

"I'm sorry-- no."

"Why didn't you see this thing a month and a half ago? I was just here."

"Sandra, your eyes were dilated before I examined you-- it's something I can only pick up before a dilated exam."

For a moment, I don't say anything.

"Now, if it turns out that I do need the laser surgery, then is that it? Does it take care of the problem?"

"Yes."

"Would the surgery also address that other issue you found with my optic nerve?"

"No, Sandra. Those are two different things."

Damn.

"Are there any risks involved with this laser treatment?"

"A surgical ophthalmologist will go over that with you in more detail-- but yes, as with any procedure, there are risks. But it's far riskier not to have it done."

So together, we head out to the front desk-- and within minutes discover that none of their specialists has an opening for several weeks.

"We need her to be seen-- and no later than two weeks out," says my doc to the receptionist, who then turns to me and says: "I'll call you early next week with an appointment date and time."

So that's it.

Now if I'd posted about this over the weekend, my tone would have bordered on the hysterical-- seeing as how a cursory googling of the words "narrow angles" turned up some mighty scary stuff.

(Not to mention the fact that this image from A Clockwork Orange kept rolling around in my head all weekend -- because I CAN NOT imagine any other way they're gonna keep my eyes open if I need this laser surgery.)

But I've had a couple of days to get a hold of myself.

And this morning, I phoned another ophthalmologist's office-- one who specializes in glaucoma.

I see her tomorrow afternoon.

When hopefully, I'll find out that this is all some kind of mistake.

Water and Sand

Three weeks ago, we were in Florida.

And I can't think of a time in the last two and a half years when my son had a greater sense of pure freedom.

It was the ocean, really.

He spent hours each day playing in the surf-- and trying to "skim" board along its edge.



Absolutely determined to learn how to do this thing...



... the whole time, no pump, no infusion site (they didn't like the salt water).

No need.

Just injections for food during the day; a new infusion site (so he could wear his pump while he slept) at night.



And my God, each and every glorious day that Joseph was on the water, he never once went high or low...

My boy was in heaven.

We all were.

Oh, and there was this one afternoon-- when I got a taste of my own kind of freedom...




... by just playing in the sand.

"At Least I'm Not Gray"

"Seriously, I don't have one single strand of gray hair," she tells me.

"And you've got all those curls now too," I say.

We both laugh.

"It's weird how it all came back curly-- and I've got a ton of it," she says, "more than before."

"Indeed. After everything you've gone through-- ya end up with this fabulous head of hair."

Again, we're laughing-- the big, belly kind that brings tears.

Her doc thinks it might have been the chemo.

Christ.

How ironic is that?

So we talk about it.

About that terrible week when Joseph was diagnosed-- the very same week she was diagnosed with breast cancer.

The chemo, the mastectomy-- the long road back.

The open wound that

JUST. WOULDN'T. HEAL.

And all those other infections.

But mostly, we talk of this new diagnosis.

"While I was in the hospital last week [with cellulitis]," she begins, "the nurse came in to give me insulin, and when I asked her why, she said it was for my 'diabetes' -- like I already knew."

God.

When her doc finally informed her of the diagnosis, he also said that -- according to her medical records -- she's had high blood sugars going back 17 years.

All those years-- and no one has ever diagnosed this.

For a while, it's hard to stay focused.

To not go insane over this fact.

Her A1c is 7.4

Definitely diabetes.

Type 2, most likely.

It runs in the family and she has many of the risk factors.

Yet her doctor said not to assume this is Type 2-- "it could be Type 1.5."

Still, he's put her on Metformin, given her a glucose meter with a script for a hundred test strips, instructed her to limit her carbs...

And that's about it.

Until they re-evaluate in June.

"When they sent me home, I didn't even know how to use a lancet," she says.

Damn.

She's my older sister -- by less than two years-- and she lives over a thousand miles away.

"Every time I stick my finger, I think of you and Joseph. How do you stand it? I get nervous at every meal. What does Joseph eat? And where do you get glucose tabs? My doctor said I'm at risk for lows, but didn't tell me where to get glucose."

Man.

"Find an endocrinologist," I tell her-- wishing I could fly there and find one for her.

"You've got to see someone who really knows this stuff-- who can give you the right diagnosis, treatment, and education."

And then we go over the differences between Type 1 and 2, highs and lows, good and not-so-good carbs...

We talk about her four kids, and her fears about how this will affect them-- especially her young one, the nine-year-old.

All the while, I'm trying not to lose it.

But then, we also talk about other things-- ridiculous, funny things.

And we laugh.

Amazing

I've been a very bad blogger of late.

Which is kind of sad because there's been plenty of grist.

In fact, I'd love to just let loose right now.

But in this moment, I can't stop thinking about Brazil.


Earlier tonight my phone rang-- a very excited friend informed me that a piece about type 1 diabetes was on the NBC Nightly News.

I tuned in just in time to see a young girl give herself an insulin injection in the abdomen. And then we were back in the studio.

Okay.

So I turned off the TV and booted up the laptop.

And there it was.

This amazing story about 13 people with type 1 diabetes in Brazil who no longer needed to take insulin.

Nor did they need to take any other kind of medication.

How could this be?

In a nutshell, these 13 study participants received treatment to stimulate stem cell growth, had those cells extracted from their blood, and then had their immune systems essentially shut down via "several days of high-dose chemotherapy." (Thus stopping their immune system's attack on their remaining beta cells.)

Their own stem cells were then injected back into their bodies in order to "build a new healthier immune system" that would no longer attack the insulin-producing cells in their pancreas.

The length of time since each participant received the treatment varied-- as a result, some have been "cured" for several months; some for as long as three years.

Wow.

I know that it's early, and this protocol is not without risks.

But man.

And The Winner Is...

My son.

First off-- thank you to everyone who commented on my previous post.

Armed with all of your excellent suggestions and many words of encouragement-- I sent off the following email to the school psychologist (whom I've discovered is the on-site coordinator for 504s):

L____,

Could you give me an update on the status of my son's 504 plan? Did you receive the paperwork I signed and sent back to you?

It's been nearly three weeks since I've heard anything, and I'm extremely anxious to get this thing put into place before the end of the school year. Is there anything I can do to help facilitate this process?

If you haven't yet received the medical information you requested from Joseph's endocrinologist, I could give her a call.

I'm sure that Dr. C____ would be happy to help expedite your receipt of Joseph's relevent medical history-- given that many of her diabetic patients have 504s and she strongly agrees that Joseph needs one as well.

Thanks for all of your help!

I then receive a note back saying that they are "waiting for a letter from Joseph's doctor."

Hmmm.

You see, I already got a letter from Joseph's doctor-- in October.

Back when the school nurse balked at my insistance on including accomodations for academic testing in Joseph's Health Management Plan.

(She just didn't see a need-- expressing disbelief that, for example, a very high blood sugar could affect Joseph's academic performance.)

At the time, frustrated by the nurse's response, I'd gone to Joseph's endo and asked her to review the plan I'd prepared.

And to write a letter approving its contents.

Here is what she sent me:

Dear School Officials:

Attached please see the individualized diabetes care plan for Joseph ___. I have reviewed and approved this plan for his school time diabetes management. Recent research has underscored the significant effects of both low and high blood glucoses on learning retention, mood, and academic performance. Diabetes care must thus be individualized to maximize glucose control in each child with diabetes. The attached plan meets Joseph's care needs.

The school nurse knew I had this letter, yet she told the school psychologist that she was waiting for Joseph's endocrinologist to send a letter describing "what needs to go into a 504 plan" for my son.

Again-- hmmm.

So.

I call the nurse.

"Hi, B-- I'm just checking in on the progress of Joseph's 504. I got an email back from L telling me that you're waiting for a letter from Joseph's doc and-- "

"Well, Sandra," she says, "Dr. C was very busy when I called her on this, and since spring break is next week, I told her there was no rush."

Hearing this made my blood boil.

(Just last week, Joseph's teacher made it clear to me that if we don't get a 504 in place soon, folks at the District will see no point in going through this process until next year.)

"B-- there is a rush," I say firmly. "We need to do this now if we want something established before middle school- "

"Well, I don't know... Joseph's been doing really well with his Health Management Plan-- and there are plenty of other kids with diabetes out there in middle school who are doing just fine."

"Yes, you're right-- Joseph has been doing well with his current plan. But that's precisely why we need to do this now.

"Because if something goes wrong-- there isn't going to be any grandfathering 504 protection."

I go on to describe some of the worst case scenarios, and then:

"B-- what exactly are you looking for from Joseph's doctor?"

"Well, we need to know what she thinks is necessary- "

"But I already have a letter that should cover that-- "

"Well, I'll be getting something back from the doctor sometime after the break... we'll let you know... "

She's not hearing me.

I tell her "thanks," hang up-- and call the psychologist.

And read her the letter.

"Sandra-- that's exactly what we need in order to move forward on this."

"Beautiful-- I''ll bring it by in half an hour."

And despite the fact that one is sitting in the nurse's office (just down the hall from the psychologist), I decide to bring along yet another copy of Joseph's plan.

Shortly after my arrival, I hand the psychologist both the letter and plan. She quietly looks through the latter document, commenting that she's "never seen it before."

(Yet another "hmmm.")

"Sandra," she says finally, "would it be possible for you to send me an electronic copy of this? Then I can just cut and paste the whole thing right into the 504."

"You bet I can."

Then I smile for the first time at this wonderful, wonderful woman.

"And, when we have the 504 meeting-- which should happen the week after spring break --" she continues, "we'll only need to discuss possible additions to what you already cover here."

"Awesome," I say, unable to stop smiling.

So there you have it.

I'll let you know if we hit any more bumps, but so far, things are looking very good.

Fighting for a 504

It dawns on me that I haven't heard anything about Joseph's 504 plan in nearly three weeks.

(Not since signing and sending back the consent for evaluation and medical release forms.)

So I call his teacher.

"Sandra, I heard something just this morning," she tells me. "There was a meeting with the principal today. Now I wasn't there, but I was told that Joseph's name came up toward the end. Seems that folks agreed that his Health Management Plan was enough-- that a 504 wasn't necessary."

"What?" I choke. "But that's not enough. Not by a long shot- "

"Now, hold on," she continues, "I told the school psychologist that I disagree. That Joseph will have no protection going into state testing-- and with more testing in middle school, he's really going to need this.

"Sandra, push for it. If you have to raise the roof, then do it-- and I promise I'll back you one hundred percent. "

(Have I told you all lately how much I love Joseph's teacher?)

So I'm sending an email to the psychologist this morning, putting in a call to the principal, and reviewing everything I can find on 504 plans.

And trying not to go ballistic.

Yet.

If anyone out there has suggestions, has been through this process and met resistance, I would very much appreciate any and all advice.

Moving Along

Hey, I'm still here.

And I'm no longer completely freaked out by my not-so-good eye appointment.

Though I can't say I'm not a little scared-- sometimes a bit more than a little.

Just not so damned freaked.

Anyhow, as a number of you wisely suggested, I did stay away from Google.

At least initially.

You see, a couple of days after writing my last post, I confirmed that there is indeed a history of glaucoma in my family.

Turns out one of my uncles got it while in his 50s-- and at least two other cases are likely.

And, well... I sort of panicked.

But then, I thought:

Wait a minute-- when the technician checked my eye pressures she said they were "good and low."

Aren't increased pressures the big indicator of glaucoma?

So I checked.

But Googling "low pressures" and "glaucoma" only made things worse.

Seems a third of all cases of the disease are what's known as "low tension" or "low pressure" glaucoma.

And there's a correlation between this type and a history of low blood pressure (my normal bp is -- and always has been -- around 90/50).

Well that sucks.

So there ended my Googling anything to do with glaucoma.

I figure that whatever I find won't matter-- it's not gonna affect my test results.

And speaking of those tests, did I mention when they're to take place?

That would be June. The 14th and the 19th.

Lovely.

So.

Best to keep busy and think about something else until then.

Thus, the Saturday after that not-at-all-good eye appointment, I visited the Botanical Gardens with Ryan and the kids.

Where we saw many beautiful things.

Eye Candy, if you will:





And the following Saturday we made a day trip to Chicago.

In addition to walking around our old neighborhood and eating at our favorite noodle joint, we spent the afternoon at the Shedd Aquarium.





Yes, a good (and very relaxing) time was had by all.

Now, you may be wondering what's been going on during the many days surrounding these two Saturday excursions.

(Obviously, not much time spent on the computer.)

Unfortunately -- since Evan has just climbed on my lap -- that, my friends, is gonna have to be another post.