Another Day In The Life

This illness takes away every bit of independence and control. My day today was ludicrous and stressful. In my mind, it is filmed in high-speed to the Benny Hill Show music.

I made three back-to-back appointments (ophthalmologist, therapy and blood draw), which is obviously foolhardy, but, if my husband is going to come home to ferry me around, I want to maximise the time. However, I didn’t want the day to be longer than it needed to be because it takes such a toll on me, so I tried to schedule the appointments as close together as possible. The ophthalmologist’s office assured me 3 separate times (because I rescheduled 3 times and asked each time) that a 2:20pm appointment would have me out by 3pm because the doctor is exceedingly timely and expeditious. I google mapped the distances between clinics and called LabCorp to ask about parking and the name of the building and what floor they were on so I was completely prepared and wouldn’t be wasting time wandering.

But, first on the schedule this morning, our cleaning lady (a luxury we obviously can’t afford, but we decided we needed once in a while to alleviate the burden on my husband) was meant to arrive at 9am. That’s very early for me, so I had scheduled the day yesterday to do nothing but organise the house in short bursts (because you actually have to tidy the house for the cleaning lady): putting away clothes and paperwork, moving blankets, yoga mats and dog beds etc. with rests in between. It takes an extraordinary amount of energy for me to do this, mainly because it involves walking things from one room to the next and up and down stairs.

Our cleaning lady is scared of the dogs, so I locked them in my bedroom with me this morning and listened to them whine to get out for an hour and a half before I texted her. I got no answer until noon, when she said she would be here at 1:30pm. She wasn’t. And my husband wasn’t home by 2 to take me to my appointments, so I stood by the door, having eaten, showered, dressed and meditated, holding my handbag, unsure of what to do. He arrived shortly after, not too late, just late enough that I was anxious. We got the dogs’ leashes on (because we had to take them with us because we couldn’t leave them home with the cleaning lady) and I hid the key for her so she could get in while we were gone.

We drove like a bat out of hell, but traffic was worse than normal. Not terrible, just bad enough to make me anxious. I got there on time, but I was still sitting in the waiting room 35 minutes later, so I had to reschedule. They said I could come back after therapy at 4pm, but the blood draw was at 4:15, so I had to reschedule that, too– to 5pm, their latest slot.

On the short drive to the therapist’s office, I was starving, as usual, so I quickly ate an apple and a bunch of plantain chips. Then I had to stand in line at reception for a full 10 minutes (exhausting) and then sat in the waiting room for another 10 minutes, wishing I had taken my time eating rather than inhaling without chewing. By the time my therapist came to get me, it was 3:15pm — not too late, just late enough to make me anxious about the appointment going over time and thus causing me to be late for my rescheduled ophthalmology visit.

I was close to tears from watching the time tick by, the stress of the day, rushing around, not being able to drive myself, being let down by cleaning lady, husband, receptionist, late doctor #1 and #2, having to schedule these appointments in the first place, having to schedule them close together because I can’t handle long outings, having to reschedule 2 out of 3 of them, trusting the ophthalmologist clinic that said 40 minutes would be enough time when I know better… so, I spent 3/4 of my therapy session ranting about the day and how frustrating it is to have no independence… and then ranting about how the day’s events were impinging on my precious therapy time! I have shrinking to do, dammit.

Of course, therapy ran late, so we drove like a bat out of hell again to the ophthalmologist, got there at 4:10 aaannnd… at 4:50pm, I was still waiting in the waiting room. Of course. So I had to call the lab and completely cancel the blood draw. What a farce!

The good news is, the different pressures in my eyes seem to have resolved, so I’m no longer considered a glaucoma suspect. The doctor wants me to try Restasis for the next 6+ months, plus steroid eye drops to address the ongoing dry eye/blepharitis/lid muscle spasms/styes/grittiness/goopiness/floaters/blury vision. Yay, more prescriptions and protocols!

Through all of this, my long-suffering husband and dogs waited in the car, but, the other good news is, he took them to the park while I was in therapy and we got to come home to a beautiful, clean home.

And then I got to do this:



Aaaahhhhh…. take me away…. 🙂


And Now For Something Completely Different…

My whole life my eyelashes have driven me nuts. They’re not inflamed or tingly, they don’t exactly itch… I used to say (this is gross) I could feel the bugs in the follicles moving around. My first memory of tugging at my lashes was in school when I was 10 years old. I remember where I was sitting and on which “fancy paper” I was writing ~ it had a horse design and I was using an eraser (which I then called a rubber) shaped like a watermelon slice. I had pulled out an eyelash and was inspecting it when I saw a classmate watching me and got embarrassed. Those of you that know me, will know the annoying eyelash syndrome of which I speak; I won’t go into more detail except to say that my eyes, lids and lashes were never dry, red, crusty, swollen or inflamed, so I never really thought about it much.

horse fancy papereraser






When I first had vision insurance in 2011, I got my eyes checked. My vision was still 20/20 and when I mentioned that my eyelashes bugged me a lot, the optometrist said I had dry eye and told me to get Systane dry eye drops. Last year, I had them checked again. It was during one of the Worst Headaches of My Life episodes, which was centered all behind one eye and I thought maybe the optometrist would see something. He didn’t. And my vision was still 20/20. But, he said, You have allergies that I can see in your eye and these dark circles are called “allergic shiners”. I got excited. Why had I never known this? (Although, my sister has the same dark circles and no allergies, so I was slightly skeptical.) He prescribed antihistamine eye drops which I swear made the annoyance worse. The little root mites were more irritated than ever.

Then one day I decided to research it because that has become my new profession: unpaid internet researcher of crazy physical conditions. By the way, did you read that NY Times article about the boy with arthritis? It’s long, but I highly recommend the read ~ especially for those of us trying to conquer diseases with diet and not drugs (plus, he drinks tart cherry juice like I do!). But I digress. I did some reading on eye maladies and my mild affliction didn’t seem to fit any of the descriptions (or look like any of the ABSOLUTELY DISGUSTING google images of eye problems. Ew, internet, I need to steel myself before looking at those sorts of pictures), but the remedy for blepharitis is to wash the eyelid with baby shampoo each day where the eyelashes meet the lid. I’ve been doing it and I think there is a difference. It’s too soon to tell, but I’m excited. I’m too sick to leave the house, but, by god, I won’t be tugging at my eyelashes! Unfortunately, my eyeBALLS have taken on a different life since I’ve been sick. They are not white anymore and they look like I’m a sick person, but this is new in the last year, so I’m not worrying about it. I’m just looking forward to one day wearing mascara again on lovely, full, long, itchless lashes.