• Lyme Lens

Thar she blows...


Tonight I am scared. Really, really scared. I don’t say that very often. Mother Nature has a way of reminding you that she is always in charge. The wind is howling outside my window right now making my entire apartment sway and I can hear the river pounding against the dock as every white cap crashes into it as if it were the ocean. I am trying to remind myself that I am safe and this is just a tropical storm. I have been through worse in the eight years that I have lived here. Welcome to the 2013 Hurricane Season.


This year is different though. This year I cannot run for my life. I feel like a caged animal, trapped by this chronic illness that paralyzes my body with weakness and pain. What if there was a tornado warning right now? How would I get out of my top floor apartment and get to safety? I am not sure that I could. It would probably mean a short hobble to the bathroom and a cowering in the bathtub while I prayed for my life which would unlikely be spared given that I am in the most vulnerable apartment on this property. You see, I face the river with literally no protection. I am on the top floor of a four story building so I have no fear of flooding but the wind is relentless. This is NOT the place to be in any storm with winds greater than 60-70 mph. That wasn’t discussed during my rental walk-through.


Thankfully, I have survived three major tropical storms since living here. The photo above was the worst. That was Tropical Storm Fay in 2008 who decided to sit and spin overhead for three days dumping over 22 inches of water which surrounded the property trapping us in our home. We were prepared so there was no harm done. We lost part of the roof but my apartment was not damaged. Our dock has taken the brunt of these acts of nature having to be rebuilt twice so far. The picture below was courtesy of Tropical Storm Beryl last year.


As I sit here tonight listening to the screens flap against my windows, I find myself having to push my fear down out of my throat. I am not a fearful person by nature. I typically take the rational approach to things. Most people would describe me as a non-emotional, problem solver type of person. I know full well what has changed in me to cause me such fear tonight. It is my chronic illness. It is this Chronic Lyme Disease and that it will not allow me to take care of myself in case of an emergency.


In previous storms, I could always TRY to run for safety. It doesn’t mean that I would be successful because Mother Nature always wins that battle but at least I could try to save myself. I can’t do that anymore. I feel like a sitting duck right now. I finally understand how that person in the wheel chair feels when the house is on fire and they can’t get out. It. Is. Awful.


Think about this for a minute, everyone says, “If you only had five minutes to get out of your house, what would you take?” Most people would say, “I would grab my kids, my pets, my family pictures, my jewelry, my important papers, my purse/wallet.” If you were to ask the same thing of a chronically ill person the first thing they would say is, “My MEDICINE.” I’m not kidding you. We cannot fathom what our lives would be like if we had to go four hours without our medicine.


What would happen to us if the pharmacies were closed? What if they won’t give us our pain medicine because we just filled it and now it is “too soon to refill” even though there was a storm and we left our medication behind in order to flee our home? What if our medications were ruined in a flooded home? Would they believe us at the pharmacy and refill our prescriptions? What if I didn’t think to grab my driver’s license on the way out the door so I can’t prove that these medicines are mine? What if they want the doctor’s permission to refill our prescriptions but we can’t reach them because the office is closed or the phone lines are down? What if we have to evacuate to another state and we run out of a medication?


Will the pharmacy in that state give us our medicine if they can’t confirm our prescription with our home pharmacy because it was leveled by the storm? Will it be enough “proof” that I am holding the bottle in front of them? Do I even have the bottle or did I just grab my pill divider as I ran out the door in fear for my life when I only had 5 minutes to get out? What if they don’t even carry the medication that I usually take? Will I have to start using substitute drugs that will interact with my other 50 pills every day? Did I grab my insurance card, credit card or any money on the way out the door because how am I going to pay for all of this medicine?


As part of an evacuation plan they always tell you to get an extra month’s worth of medication and put it in your “hurricane kit” so you will be prepared. I asked the pharmacist if I would be allowed to get an extra month’s medication because some of my medicines are controlled substances and they won’t even fill them a few days early. Why would they give me an entire 30 days of hurricane pills when Mom gets the stink-eye for wanting to pick up my monthly prescriptions a day early if she happens to be getting groceries? The pharmacist said that the doctor just has to write me a prescription for the medication and on the script it has to say that it is for storm preparedness or hurricane evacuation purposes. She said that the insurance company is supposed to pay for the medication under these circumstances but having read my prior post about insurance companies….let’s just leave that unsaid. I haven’t tried getting my hurricane meds yet but as I lie here listening to the wind tear apart my yard it has moved up on my priority list.


All of the medication questions spin in the head of a chronically ill person whenever we hear that a storm is spinning in the ocean. We wonder if we should go get the written prescriptions from the doctor and keep the paper copies in our kit or actually go fill the pills? Some of us are not even sure if our doctors will write us an extra month’s worth of pills! Not everyone is blessed with the wonderful, trusting relationship that I share with my doctor. A lot of people are on Medicare and they have something called the “donut hole” with their prescription plans. This means that they are only allowed a certain amount of medication costs to be covered and after that, they are responsible for payment on their drugs until a certain point when the insurance will then start paying again. Many of these people are on fixed incomes and cannot afford to pay for 10+ prescriptions that are going to sit in a bag all summer when they can barely afford to eat.


Medications are a small part of the fear that we face when being a person with Chronic Lyme Disease and we hear that a storm is coming. We also worry about the need to evacuate our homes, how we will travel and where we will find the strength to rebuild after the event is over. I have had the cautious, hair rising on the back of my neck, respect for the power of Mother Nature many times in my life. I survived the blizzard of 1993 when I was rescued out of my car while (stupidly) trying to drive to upstate New York. As mentioned, I have witnessed the wrath of three tropical storms so far and I do not intend to ride out a hurricane in this apartment even if it is “only a category 1” as they like to say down here. But tonight my fear was not that healthy fear of what Mother Nature can do. It was from a different place entirely. It was the fear of what I CANNOT do. I can no longer run for my life.

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