cascadia

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.

I have not failed. I’ve just found 10,000 ways that won’t work~Thomas Edison

Many accusations are waged against politically conservative Americans today. They are accused of being racist if they go against Obama’s policies. These same conservatives applauded Dr. Condoleezza Rice as Secretary of State and General Colin Powell appointed during the Bush Administration. Common sense people, common sense. Former President Jimmy Carter and others hailing these stupid accusations need to use some common sense.

Racism. Racism is an entity. Racist itself is a social evil that knows no boundaries, culture, color or social class. Racism according to dictionary.com;

–noun

1. a belief or doctrine that inherent differences among the various human races determine cultural or individual achievement, usually involving the idea that one’s own race is superior and has the right to rule others.
2. a policy, system of government, etc., based upon or fostering such a doctrine; discrimination.
3. hatred or intolerance of another race or other races.

Racism is not a white issue, it is the issue and anyone of any color or race can and do choose to implement this evil thought process in their lives. Now apply the above to conservatives against President Obama’s policies and ask yourself, if these people were racist why were they not outraged at the appointment of Rice and Powell?

I am not a racist yet I strongly oppose any policy that allows the government to over spend and over tax. I oppose any policy that gives the government more control over the people. I oppose corruption and guess what? I oppose racism.

Dr Condoleezza Rice


I am heading towards my 50th birthday. It is not such a big deal until you figure in the fibromyalgia, hereditary hemochromatosis, lupus and several major surgeries. I’ve nearly died of liver failure. So you see, making 50 is quite the achievement.

No matter what any Doctor tells you, don’t accept other peoples limitations. Don’t ever think it is over, never give up! I am living proof that in the face of terrible odds life can be as sweet as it is bitter. A life of passion can expect nothing less. Just try to tell me I can’t do something, I will prove you wrong.

Everyday with lupus is a burden, just getting out of bed is a challenge even though it hurts to even lay there. Summer is hell. I have literally had to go on anti-depressants to get through it. Lupus is heat and sun sensitive which actually means allowing the sun to touch my skin can set me back and require me to take many drugs to overcome an exacerbation. Exacerbations can be any part of the body swelling up, shutting down or any number of crazy lupoid manifestations.

My beloved, quirky aspie husband just spent the last year making it possible for me to be out on the road with him. He went through trucking school then worked for peanuts for 8 months in order to get into the industry, even though he already not only holds a CDL, knows how to drive and can take a truck apart and put it back together. He did it all for me to get me out of the house. We hope to buy our own truck and then we will haul loads north during the summers. It is not a trucker friendly world out there but one thing you will learn about Dave is he is 4′10″ of strength and common sense. He never complains.

We have both lived extremely quirky lives and continue to. Dave was 13 years old driving a WW2 jeep up a mountain hauling water to the mine in a tiny mining town near Death Valley called “Darwin.” It was filled with odd eccentric folks and is now a ghost town.

I was raised in a cult and escaped the insanity by spending my time with animals. I was born with a special gift, to a Christian it is the gift of wisdom and discernment. To modern paranormal investigators it is called being an empath, a sensitive. From childhood I could feel and see things others can not. I am at peace communing with nature and animals. My gifts have been validated with evidence so we know I am not delusional.

Come along with us on our over the road journey and we will share with you the quirky side of America. Always off the beaten path. Dave was born with what is called Asperger’s Syndrome. It means he is a quirky genius but not real interested in a lot of interaction so I will be our voice across America.

God Bless,

Dave and Kathleen

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