Dying to Live, What’s the Plan?

What led to the RV decision you may ask?

Great question. We are both sick, yes, that sounds absolutely insane, right? Two sick people wanting to live in an RV and travel the country while being sick! We have major illnesses too. Shall I go on? Okay, as you wish.

Oh my, where to begin? Geez….. I am a type 2 diabetic, I have connective tissue disease (basically my immune system attacks itself), rheumatoid arthritis is active and I take methotrexate weekly which is a chemotherapy drug as well as I have been on infusions for about 4 years now, I just switched to a new 5 hour infusion with hopes that I may only need it every 6 months versus every 6 weeks. A little more? I have gastroparesis (the upper part of my stomach works slower than the average persons and is basically paralyzed), I am gluten intolerant, I suffer from anxiety and depression. Enough about me now, that’s quite depressing in itself, huh? Especially considering I’ve always held high positions in my career and I have a Bachelors degree and most days I only have the energy to get from the house to the car!

Now let's talk about my boyfriend, Ed, who goes by Ted (not his real name, his family calls him that). We worked together at a previous job in 2010, honestly I had a crush on him during that time, we were both married. When I was single for a short time, I saw him out at a local bar and frankly he was a dick to me. Needless to say I did not bother pursuing any further contact after that, well not until September of 2018, which brings us to now. Here goes, he has the Big “C”…… yes he has cancer, blood cancer… PV… Polycythemia Vera. His hemoglobin is too high, he produces too many white and red blood cells and his blood is super thick. He has a higher chance of having a stroke, heart attack or blood clot. He receives phlebotomies on a regular basis. We decided to change care to UVA in Charlottesville, Virginia. Once we transferred care, he was able to come off of chemotherapy medication and his bloodwork has stabilized, for now. He is monitored monthly. His fatigue levels are up and down, more down than up.

Taking all of this into consideration, we decided our life was probably going to be shorter than most based on our illnesses and the doctors do not disagree, so why not try to live it to the fullest. Hit the road! But, yes there is a but, we have to have income, we need an RV, we need a plan. He loves photography, he loves nature. He is really great too! Very critical of his own work, however, we are going to get his photography business running along the way as well.

This is the beginning of our plan. I’m taking the reigns and I am now blogging our journey, tweeting, seeking affiliates, hopefully sponsors, and sharing on Facebook. I truly believe that although we are sick, that should not define us. We can’t climb huge mountains and we can’t swim across the oceans, however, we can dream, plan, pray, and try, try our hardest to make this dream come true! With an RV we can stop when we are sick, we can go when we are not fatigued. Figuratively speaking it should take us 2 years to see all of the sites we want to see across the United States. After that, if we aren’t dead, sick of each other or one of us hasn’t killed the other (just kidding), we can pursue our next dream of owning a home near the mountains and settling down for our Golden Years…

Colorful Chaos The Journey

Not everything is always in black and white. Join us on our journey as we battle incurable invisible illnesses. We are seeking mental freedom as we prepare to unwind and unravel amongst nature. We raise awareness for Polycythemia Vera and Invisible Illnesses such as Mental Health, Rheumatoid Arthritis, Fibromyalgia, Diabetes, along with a variety of other “silent” struggles that we may deal with along the way. We are not going to let these illnesses hold us down. During our journey we need support. The support of each other, family, friends, followers, readers, and fellow, adventures! Enjoy our photography and stories. You can support us through PayPal and our Esty Shop!

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