I’m not going to lie, I’m nervous. Life with lupus is not for sissy’s. Living with lupus in a box on the road is going to be a whole new experience. I’ve been dreaming of this new chapter in my life. Dave and I have been planning. He paid the dues for both of us by working as a team driver at a “trucking school” truck company. These companies flood the roads with new drivers working off their over-inflated school fee’s. It’s a rough way to break into trucking.
Lupus brings with it certain “special needs” to contend with. Things like bladders and bowels that do not work right. This is embarrassing to write but I am committed to honesty here, we are going to put a small porta-potty on the rig in case of emergency. I am one blessed woman to have found such an understanding husband. Ok, this is gross and graphic but will also pack a barf bucket. With lupus you are more susceptible to food poison. A stomach flu can lead to projectile vomiting as your head spins around like on the Exorcist, while the other end is turning itself inside out.
Covering up is mandatory. I’ve been buying sun protective clothing items on ebay. I hate wearing mens clothes but if I can get a new UV protective shirt for $20 instead of $80 I have to buy it. Head coverings are vital, I have ugly hats, can’t afford the pricey UV hats. I do wear long scarves pulling them up over my head when in the sun or vehicles. I look like a Muslim woman, most people gawk at first but scarves work better for me than hats anyway. Scarves allow air to flow around the head.
Lupies have to be very careful not to eat or use anything that may cause an allergic reaction. Once an allergic reaction begins, it often will go from bad to worse even after you have removed the allergen. Recently I ran out of my natural shampoo and used Garnier Nutrise. After 2 applications my scalp broke out in a lupus rash. Right now it is blistered and spread to the entire back of my scalp. So travelling to new places and experiencing new things will have a dark side to avoid.
There’s no such thing as “packing light” with lupus. Besides the special clothes there is usually special food. All lupies should be on large quantities of fresh organic produce. Lupies need extra rest. We can’t just work through it or push ourselves. Oh well yes we can, but we will pay a dear price for it later with extra miserable pain or a potentially life threatening exacerbation.
The risks of infection are going to be greater since I will come into contact with hundreds of people’s germs at truck stops. Dave takes extra precautions for me. He uses care in public restrooms and germicide.
The secret to my happiness and joy are; pain management, my faith, and the fact that I do not have to give in to fear. We all will die, it is a fact! Some die sooner than others with or without lupus. We can not live in fear with or without lupus.
So live! Dream! There are no failures only the chance to find another way to live your passions.