This title says a lot. Of course, it’s my favorite Bob Dylan song, but it’s also where many of us dealing with a chronic disease or illness find ourselves. We’re at the mercy of doctors who don’t have answers, medical research that hasn’t caught up, misdiagnoses, trying one overpriced medication after the other, navigating through insurance companies’ bizarre policies, and on and on.
A little over two weeks ago, I received a call from my ophthalmologist’s coordinator telling me that my doctor had a change of thought regarding my Intacs surgery and would call me personally that night. It was a Friday. I was out of options as far as my keratoconus goes, so I knew he would say he thought a corneal transplant in my worse eye was the direction we were going in now. Needless to say, I was dreading the call. I waited and waited and no call. I waited all weekend and no call. I called the answering service and he wasn’t on-call. So, I waited until Monday.
I got an e-mail from the coordinator and a call from the doctor saying that their CXL trial was on hold even longer due to the FDA and I needed to go to Los Angeles as soon as possible to get the procedure done there. I was given the names of two doctors, both of whom I recognized from all my online research. One gave me an uneasy feeling, but I called both regardless to get the hard facts.
To protect everyone’s privacy, I went with the doctor that I had great faith in and even though I will be in a clinical trial, I can get the CXL done in both eyes on the same day and do all my follow-ups with my doctor here, which is great. I am paying more, but was able to negotiate somewhat on the cost—doctors pad the price to cover all the follow-ups, which I wouldn’t be doing in L.A. I am so glad that I got the facts and will not be seeing the doctor that sounds like a snake oil salesman.
Then the big stress came. I had to figure out how to get to L.A., as I can’t drive except for short trips around town since my soft contacts don’t work for long. I have a massive fear of flying and L.A. is a doable drive, plus I have a cat I’d rather bring since we’re inseparable. I arranged for someone here to drive me to the Palm Springs area, where my mother has a winter home (currently empty) and then my mother will fly to her winter home and drive me to L.A. We need to stay for 2 days so I had to figure out the hotel, etc. Why does the sick person have to do all of this? Well, that’s the way things go in my life and why the word “support” is some sort of foreign concept.
My exam/CXL procedure are all scheduled for 9/13/12 and then I return the next morning for a post-op and am on my way back to the California desert, which is hotter than here. I’m just hoping the monsoon will be gone by then, but it’s still lingering this week. My cat loves it at my mother’s home in California—it’s on a golf course and she’s stuck on a dusty balcony here, so at least she’ll be happy since we haven’t been there in years.
The procedure will be the same as the CXL I was to get here, just in both eyes on the same day so I don’t have to travel to L.A. again. I’m most concerned about the eye pain following the CXL, as I can’t take narcotics since they make me very sick. I am getting several Rx eye drops and eye drops for pain, so I hope I can tolerate that.
It seems this all should have gone smoothly, but it didn’t. I had to get medical records from two doctors and there were errors and delays. Then I had to make copies and organize those and get them in the mail ASAP. I had all the “back and forth” with the doctor in L.A.’s coordinator to work out the kinks; she and my L.A. doctor are both great and on top of everything, unlike here. I think it took three days to organize the people who are “helping” me to get to L.A. I don’t know what took so much time and so many hours, but I don’t think I even ate for a week and my anxiety was through the roof.
It’s very hard to deal with so much all on your own when you are sick, but that’s all I know, and there isn’t anyone to help ever. So, I just kept putting one foot in front of the other until I got every last detail worked out, including an itinerary since no one can seem to write a date in a calendar. Having “low vision” makes things hard enough, but it’s the fibromyalgia* (see update) that really makes having to go into “overdrive” so difficult. In my former life before I got sick, this would have been much easier to handle.
The other thing that is making me anxious right now is what I’m supposed to do after the procedure in order to see well enough to function. I’m not doing that great right now as it is. I have my 1st two follow-ups scheduled—one is at day 6 to remove the “liquid bandage contacts.”
No one can really tell me when I can wear soft contacts again and I do know that my vision will be worse after the CXL due to the blurriness it causes. I’m fine that first week since I’ll be mostly with my mother, but what do I do after that? I have someone who can give me a ride once or maybe twice a week (doesn’t really want to since he’s stuck with driving me to California), but how will I get to my doctor appointments, physical therapy, the pharmacy, the grocery store, etc.?
I know that my corneas need to be healthy enough first, but even if they are at week 2, how can the optometrist get me into another trial pair of soft contacts—my plan until my corneas stabilize—if I have this blurriness problem, as it’s quite possible I will slowly get an improvement in vision and the current Rx I have will be too strong? How will I even get there? Again, having supportive people in your life would make living with any chronic ailment so much easier. Of course, living in a city with functional mass-transit would also be nice.
*Update: I was diagnosed with Ehlers-Danlos syndrome (EDS) by a geneticist in November, 2012. It is an inherited connective tissue disorder that is sometimes misdiagnosed as fibromyalgia and can cause keratoconus. I have written about this on my blog.