Just Heather

On Monday, I visited a retinal specialist to see what could be done about my eye problem. I knew I had macular degeneration, caused by retinal bleeding. What I didn’t know was what they were going to do about it.

Turns out? They wanted to stick a needle in my eye. In. My. Eye. A needle—did I mention that? Maybe praying I wouldn’t need surgery wasn’t such a good idea.

(Dear God, Very funny. Love, Me.)

Surgery is an option, but he wanted to try medication first. It’s actually a cancer medication called Avastin but has been used successfully for years in this off-label use. The problem? They have to inject it directly into my eyeball every 6 weeks until the blood vessels shrink and the swelling goes down.

After that, “maybe” I’ll get my vision back. They “hope” to see improvement over the next year. But, hey—I’m young! And, he’s “always surprised” by how well we “young people” do. While none of that is at all encouraging, it did help to know my right eye is fine(ish).

The retinal bleed is caused by ocular histoplasmosis. And, before you ask, no. I didn’t grow up on a chicken farm! This is an adult complication from a fungal infection in childhood, typically associated with chicken coupes.

I had never even seen a chicken coupe until a school field trip just a few months ago. Apparently? After my eye issues started. My doctor believes this has been going on for months, but I didn’t notice because I am right eye dominant.

My right eye also has a few “histo spots” but shows no signs of complications since they aren’t near my central vision. While my chances of regaining the vision in my left eye are up in the air, my fears of going completely blind have been alleviated.

My fear of needles? Out in full force.

And, they expect me to come back to their torture chamber in 6 weeks. To once again ply me full of a dozen eye drops, pry open my eye and stick a needle in it! You might think with all the numbing agents, I wouldn’t really feel it. Oh, how I wish!

It didn’t hurt all that much, at the time, but the sensation of having something inside your eyeball is a bit creepy. It also hurt a lot after the meds wore off. I’m doing much better today, but I’m still sensitive to light and the computer screen hurts my eyes.

My future’s so bright, I gotta wear shades…

A couple weeks ago, I woke up with a headache, sore throat, stuffy nose and blurry vision. None of this is odd—I get strep throat & sinus infections several times per year, and if I wore my glasses more often there’s a chance I could see clearly.

My cold went away, and I could see again—in my right eye. My left eye? Still pretty blurry. Then something weird happened Friday night. The blurry vision? Was suddenly very localized, like there’s a big bubble in the center of my eye. It’s a good thing I spent so many years in marching band—if peripheral vision is all I’ve got, I’m glad it’s so well developed.

I went to Lenscrafters in my first free minute on Saturday. They were booked but scheduled an appointment for Sunday. I flunked most of my pre-screening tests. You know,the ones for my left eye. Then, I headed back to see the eye doc. Yes, this is Lenscrafters but he’s an independent ophthalmologist and has always been great with Brenia.

He asked a lot of questions, looked at my retinal pictures and told me my problem was beyond his expertise. Um, that’s not something you want to hear. Ever. I have a retinal bleed, causing wet macular degeneration—a central vision blind spot. He referred me to a retinal specialist (appointment at 1:15 today) for immediate surgery.

There’s an 80% chance my vision will be completely restored once they stop the bleeding. That’s a passing grade and everything, but that 20%? Sounds awfully high when you’re talking about my sight.

I. Am. Terrified.

And, not just about losing my vision. It took me most of yesterday (with lots of tears that are possibly not good for a bleeding eye), but I’ve come to terms with that. I think. It’s just one eye, anyway. I’m currently ignoring Dr. Google who hints that it could happen to the other one as well. Dr. Google is mean and scary.

I’m scared of surgery. They’re going to point laser beams at my eye. My eye!

I’m scared of the financial ramifications. Our insurance is basically sucky, our HSA is fairly depleted from other events, we just received a huge list of repairs for the rental house we own, and our savings account? Not what it should be.

My eyesight or letting Lorelai go to preschool as planned? My eyesight or keeping the girls in their current school. My eyesight or the Disney vacation my girls have been excited about for months? I might honestly choose all the things my girls “need” except that my personal income pretty much relies on my eyes. How can I blog blind? But, we’re ignoring that possibility for the moment.

Except. I’m not.

I am sick. I have been sick for almost a week. I am sick enough to actually cancel my Girl Scout troop meeting today. I have only done this once before, for a car accident. I wasn’t going to make it back on time so I canceled the meeting only to find out that the school canceled all after-school activities later that day due to weather.

I had the same luck today! After making arrangements all morning to reschedule, I just found out that the school canceled today’s activities due to the weather. I could have let them make all my phone calls while I took a nap!

This school system is funny. It takes a lot of bad weather to delay school, and practically requires a blizzard to cancel altogether. However, they will cancel after school activities at the drop of a hat. I really should have known this would happen. After all, there is wet stuff on the ground. Heaven knows no one can drive when that happens.

We passed around a fantastically fun stomach bug this week. I spent Wednesday cleaning up vomit and Thursday laying on the couch myself so I’m about 5 days behind now! Tonight I am taking one of my Girl Scout troops ice skating. Sunday I’m ice skating with my Daisy troop. By Monday I’ll be one giant bruise. It should be fun anyway, but not so helpful in getting caught up.

I started this post with the intention of blogging out my to-do list to give me some accountability. However, I’ve come a long way recently in organizing, cleaning and maintaining a few areas of my life. It just might kill my motivation to look at a long list of things I still haven’t done. Instead, I’m going to focus on a Ta-Da list of things I have actually completed already this year!

  • cleaned an entire shoebox of overdue paperwork
  • sorted coupons and recycled a box full of expired inserts
  • submitted 2 months worth of segment ideas to my producers
  • completed & filed 2007 taxes
  • reorganized hundreds of srapbooking sticker, papers and die cuts
  • followed a menu plan, stocked emergency meals and avoided the drive-thru (okay, so this was for January only and I didn’t completely avoid the drive-thru, but we cut way back and I’m starting over this weekend!)

I’m still swimming upstream, but in the interest of full disclosure I’ll work on getting this up-to-date.

  • Being sick sucks. The entire family had a stomach bug last week (which we so lovingly passed onto my hometown via my nephew). This week it’s a cold so bad I honestly thought it might lead to pneumonia. It seems to be clearing a bit, but I have been through about 2 boxes of tissues in as many days.
  • The armadillo my Girl Scout troop adored on our field trip died in a fire this weekend at the zoo. That makes me unbelievably sad.
  • Venatieri can go back to the Patriots now. That is all.
  • Except to say I just don’t see this great clutch kicker everyone talks about. Vanderjagt may be an arrogant smart ass, but I’d take him any day.
  • I’m working on arrangements to do a live segment on Black Friday. They want me much earlier than usual though, and I was planning to be at Target right about then.
  • The pacifier is officially gone. My goal was by age 2, which happened 10 days ago. Two days before her birthday, she went to bed without and hasn’t had it since. She asked about it nightly for awhile, but seems to be over it now. If only potty training were that easy.
  • I’m planning a Charlie & Lola Pink Milk Party for Brenia this year. It was supposed to be a Pirate/Princess Tea, but the stupid Birthday Express catalog came in the mail and she fell in love with the C&L crap.
  • The gluten free diet has been deemed an official success by the girls’ pediatrician. This time last year we were still in the testing stage and Lorelai weighed 14.4, falling in the 1 percentile. At her 2-year checkup she weighed nearly 26 pounds and falls right at the 50th percentile!
  • If anyone has ideas on how to teach organization and responsibility to a 4th grader, I’m all ears. After a month on the Spell Bowl team, winning Power Speller each week, we found out Stacia doesn’t actually get to compete this week. She is an alternate because she did not bother to turn in 3 50-point assignments. Oops.
  • Also, if you have ideas on organization for a busy mom, send them my way! We worked hard all weekend and I’m starting to get control of some things around here. However, I have yet to tackle the 50-gallon tub that holds my paperwork.

Allow me to give you a few excerpts from my terrible, horrible, no good, very bad day.

  • Took my sick, crabby baby to the doctor. She either has the start of a sinus infection or will require regular medication for seasonal allergies. I never thought I’d say this, but I really hope my baby is sick.
  • Got a phone call from the principal today. Some psycho kid threw a chair at my daughter. Knowing my daughter, however, I’m sure it was provoked. The kid says she was “saying mean things on the bus” which is odd since she hasn’t ridden the bus for two days.
  • Sent said child to bed without dinner because she threw an all out kicking, screaming tantrum when we tried to talk to her about what may have led up to the Bobby Knight incident. She will not, however, be in trouble for yelling obscenities at the kid on the bus as I would have too if he tripped me every day.
  • Had to call up all knowledge of Heimlich for my baby who choked—real and actual choking—on the food her sister left out after lunch.
  • Caught my 4-year-old stealing candy that I refused to buy for her. This stealing thing has become a problem, though this is the first time it has been outside of our own home. I’m raising a klepto here and not really sure what to do about it. She seems pretty remorseful and I’m hopeful our conversations got through to her.
  • Had an interesting experience at the store when a coupon for $1.99 rang up for $1.00. The idiot cashier told me “that’s how it worked” and offered to “explain coupons” to me! Ha! I wanted to scream, “I’ve been on CBS, the front page of the Chicago Tribune and syndicated across the nation as a ‘coupon expert’ and you want to teach me how coupons work?!” Instead, I used my coupon at the back of the store while I paid for Lorelai’s prescription where the pharmacist had no problem getting it to work correctly. Then I came home and shot off an email to their corporate office about the moronic “manager” and how rudely I was treated.

Why does it seem that doctors are more interested in labeling symptoms than finding a proper diagnosis? I am finding this a lot in relation to celiac disease. So many people come to the gluten free lifestyle after years of being diagnosed as a variety of things that are really just symptoms of a disease that has a complete turnabout with a gluten free diet. Of course, the doctors and pharmacies don’t make any money if I simply eat right, do they?

Celiac Disease is listed as one of the top disease doctors miss because they are too busy labeling our symptoms. Constant tummy issues? Irritable Bowel Syndrome (syndrome, not a disease—there has to be a cause somewhere). Extreme fatigue—we’ll call that Chronic Fatigue Syndrome and not bother to find out why. Anemia—wouldn’t the iron deficiency be caused by something?

We are still working out Lorelai’s iron deficiency. She used to get her iron from formula (on occasion) and fortified breads & cereals. Now she is gluten free and can’t seem to handle meat either. No iron for her. The only things she can stomach that are slightly higher in iron are sweet potatoes and raisins—both of which she loves. They seem to be helping with her energy levels, but the diapers are not so pretty. I think we’ll have to start a baby vitamin.

At least we have an answer for Lorelai. So many people still don’t have answers for their issues, including many in my own family. Considering the genetic link for celiac disease I’m sure I know their answer, but they don’t seem to want it. They’d rather take a variety of medications or deal with stomach pains and other issues than live a healthy, happy life without bread.

After my youngest daughter’s diagnosis last year, I did a lot of research on celiac disease, naturally. I started noticing symptoms that we had taken to our pediatrician(s) numerous times over the course of 9 years, but no one had ever connected them.

It all seems rather disconnected, after all. I would never have guessed that joint pain (diagnosis: growing pains), skin disorders (diagnosis: eczema), behavioral issues (diagnosis: undiscovered after repeated visits with child psychologists, school counselors and doctors) and chronic nasal conditions (diagnosis: allergies, sinusitis, ear infections) were in any way related until I saw them all on one symptom list for the first time.

We made the decision in December to have the girls tested, but they balked at the idea of someone “taking out their blood.” Knowing that testing is unreliable in children anyway, we agreed to try a dietary challenge. The idea was that we would remove gluten from their diet, reintroducing it at 3 separate times over the course of 3 months. By day 5 of our first gluten free week, we were having the most peaceful days in recent memory. The first challenge was an utter failure—with the girls in pain less than an hour after their breakfast toast, in the bathroom all day and hyperactive off the charts by the next afternoon. As that last part could be chalked up to Christmas-mania, we were only looking to the gastrointestinal issues for results.

The end of the second gluten challenge a few weeks later had our oldest daughter begging, “Please don’t make me do the 3rd challenge.” The girls have now been completely gluten free for over 2 months. The few accidents we’ve encountered along the way have only served to prove how right the decision was. They now react to gluten with immediate, obvious, physical signs (especially Brenia)—flushed cheeks, hyperactivity, anger issues and complete exhaustion.

I decided the genes had to come from somewhere and decided to have myself tested. The problem is you are supposed to be eating the equivalent of 4 pieces of bread a day for 2-3 months for accurate readings and I have been pretty “gluten-lite” since Lorelai’s diagnosis. It only made sense to cook one family meal every night so my only source of gluten was lunch here and there. Of course, we all know I’m not patient enough for that so I had the blood test anyway. It came back midway in the normal range, which my doctor said given my recent diet was probably inconclusive. In lieu of additional testing, she suggested I go completely gluten free for 3 months.

I’m starting month two and have shown the same significant improvement as all three girls. I would never have referred to any of my “issues” as symptoms, but now that they are gone it has been life-changing. I have more energy than I can remember having in my life. I am more focused than ever—the house first floor (I’m getting there!) has been cleaner and more organized than ever before. The headaches I have had nearly daily since I was a child are few and far between. I lost 4 pounds in the first 4 days—presumably all water weight as I lost immediate inches. I never realized how bloated I was until it went away and came back again in a rush after a gluten mistake.

While I can’t say I’m truly glad to have a lifelong autoimmune disorder, I am so thrilled to have discovered it. I feel great, my house/life are (fairly) in order for the first time and I am enjoy my children more than ever before. Of course, the absence of their attitude and anger-management issues make that so much easier. All I know is, positive test or not, it’s the gluten-free life for me (and my kids)!