I have Lyme. I’d like to not have it anymore. I also just want cake.
The following is an excerpt taken from my first Initial Consultation Summary with Dr J, my current Lyme Specialist whom I met while seeking a second opinion for my condition.
COMMENT: “Tara and her family are understandably concerned and perplexed by her ongoing health struggles. We agree with Dr. N that the complex infections involved with Lyme Borreliosis Complex are contributing and she would benefit from aggressive therapy…”
Thus the draining of our bank account began.
There are many costs associated with Lyme Disease as any sufferer will tell you. Obviously doctor visits, medications, frequent blood draws, procedures, medical supplies, dietary supplements, emergency visits, and for those who travel great distances to see their doctors such as myself, travel expenses, are to be expected. Today, I want to share a few unexpected costs and possibly lighten the mood around here a little bit. Jeez.
1. Bendy Straws.
One of the joys of my disease has been a wide range of neurological deficits. My family (husband especially) finds them occasionally entertaining. At first I did not. But as treatment progresses and I start seeing an end to their madness, I am warming up to the idea of laughing at myself. One of those deficits has been the inability to judge spatial distances accurately. For the purpose of this example, let’s just focus on my drinking challenges. I have fed my cheeks water. I have poured water up my nose. I have excitedly brought my cup to the correct part of my face only to end up pouring it my lap, just short of my lips. I have successfully brought cups to my lips, only to tip it all back too fast and Niagra Falls my face. I refuse to remain the toddler of the house. If there isn’t a straw in my cup, I won’t touch it.
It only took a few weeks of being couch-bound in a no-cable house before I emphatically pronounced that if I had to watch one more episode of Kathy Lee & Hoda or the Queen Latifah Show I was going to turn to street drugs to get through the day. That is all I will say about that.
3. Extension Cords.
Being couch-bound becomes a prison when the furthest outlet is just inches beyond your phone charger cord length. Or the heating pad cord. Or the fan cord. Or most importantly, places your Roku at an unacceptably far distance from your TV. Electronics need to be together, okay.
4. Blankets on Blankets on Blankets.
The Jarisch Herxheimer reaction is like my new house-guest that just won’t leave. (If your face just went all sideways as you exclained “Jarisch what?”, learn about it on my Lyme tab on the Menu). The herx makes Tara cold. Nothing, I repeat nothing, warms up a herx-induced chill. Are you using that blanket? Give it to me. Are you using that blanket? I need it on top of this one. Dog, you have fur, you do not need this blanket and I am going to take it. D? Oh you’re asleep? *takes ALL of the down comforter in the middle of the night*. If you can’t find me (which would be just plain ridiculous these days), just look for a pile of blankets on the couch with 2 inches of face sticking out on one of the edges. Poor D has resorted to pulling out the hideous, 100% pure polyester camping blankets to use for himself. Every night I fear he’ll be the first to succumb to the flames if our house catches on fire. People, buy safe blankets for your loved ones after you have taken everything else.
5. Airport Food
I know this seems like, duh. You don’t have to have Lyme Disease to feel robbed at the deli counter of an airport. But hear me out. I’m special. I travel every 4-6 weeks to see my doctor. I travel 2,088 miles to see my doctor. That is no short travel day for me at the airport. Now consider the fact that I have been put on a strict no-gluten, no-sugar diet. Boom. You’ve just eliminated 99% of the available foods an airport or airplane beverage & snack cart has to offer. Prepared, I have $25 worth of organic meal bars from Whole Foods (so, three bars) in my bag. Unprepared, I have to go on a treasure hunt to find the ONE gluten and sugar-free (artificial sweeteners also not allowed!) protein bar that will be available for purchase at the airport. “That will be $12.49 ma’am.” Thanks. I’ll be hungry again in two hours. In the sky over Nebraska. Only 1, 151 miles to go…