What is your threshold for chaos?

What is your threshold for chaos?

This has been a tough year for Shawn and I.  We have had to weather family crises, the death of my grandmother, a tough work assignment, shifting locations, and a medical leave of absence to focus on my health.  On top of all of that, we finally found an old Bluebird Wanderlodge to restore and live in.

And by we, I mean, me.  For some crazy reason I fell in love with the bus, and after coming so close to buying three other buses that fell through at the last minute, we bought it sight unseen and Shawn flew out to Oregon to bring it back.

Continue reading What is your threshold for chaos?

Was there life before MS?

Kat wrote a post about my recent MS flare-up and the resulting permanent new symptom. It got me thinking, Can I really remember my life before this all began?

My mother told me about a time when I was six years old and she brought me to the hospital because I couldn’t stand up for two days. I went back into my medical records and found the incident, followed by my entire medical history (it looks like the yellow pages) and discovered that I have actually never known life without my MS. At the age of six years old my doctors thought I was either faking it or it was something psychological. No one had ever thought to stick a child in an MRI.

Just over 16 years later I was driving home on 190 in Worcester Ma at around 10 o’clock at night. I tried to slow down as I approached my exit, and to my surprise my right leg didn’t move.  No matter what I did I couldn’t even get it to budge. I used my hand to move my leg out of the way and proceeded to get off the highway using my left leg. I immediately drove to UMass Worcester and stumbled into the ER.

The ER is an interesting place when you’re 22. You go in there telling them that you can’t move your leg or even feel it and the first question they ask is: “What did you take?” After all the questions were out of the way and I finally got to see a doctor he still didn’t believe me.  To prove that I was faking, he stuck a 2 inch needle into my leg. To my surprise as well as his, I didn’t even twitch. He tried to hide the freaked out look on his face, (he failed), and he called over a nurse to get blood from me.

I was immediately scheduled for a myriad of tests that I had never heard of. Over the next week I was poked and prodded and shoved in loud, clicking, banging machines. I was x-rayed, scanned, and practically drained of blood while they tried to figure it out.

By this time it was a few days later and my leg was still numb but it was working, so being my father’s son, I followed his sage advice of  “unless you’re dead or dying, shut up and get back to work”.  So I went back to work and waited to hear from the doctors.

I had practically forgotten about it a week later when the phone rang. It was the doctor from UMass and he wasn’t happy. He asked why I didn’t tell him that I had MS and told me I needed to come into the office and see him the following day. I explained that I had no idea what he was talking about and that I didn’t even know what MS was. Right then he realized what he had just done. He told me it was incredibly important that I see him the following day, so I said fine and hung up.

Granted, at this time the Internet was still new to most people, dial-up AOL was the biggest thing and everybody was using it. So me being the resourceful 22-year-old I was, I went online and read about MS… Worst fucking thing I could have done! When I was done reading about what it was, I sat there staring at a wall for the next few hours, in disbelief of what I had just read.

My first ever MRI had shown 25 small to moderate scars on my cerebral and cervical nerves. On November 15, 1998 at the age of 22, I was officially diagnosed with multiple sclerosis, 16 years late. Over the years since my diagnosis, I have discussed my childhood at length with my parents. A lot of mysterious aches, pains, and other problems I had growing up now made sense.

Although I can remember my younger years where MS wasn’t a fully present factor in my life, because I hadn’t yet been diagnosed or progressed to the point of my official diagnosis, there really hasn’t ever been a period where MS wasn’t affecting my life.

 

Root Cause

When I first received my Fibro diagnosis, I immediately put on my researcher hat and delved into articles and journals to figure out what was causing this madness in my body. As with most chronic illnesses, there are a lot of theories to why people get fibro. One that popped up over and over was the theory that a physically and/or mentally traumatic event occurs and causes the central nervous system to go berserk.

This caused a particularly bad train of thought to leave the station. For days I thought about what horribly traumatic event I experienced in my past would have caused this. Over and over, and each time I came up empty.

Continue reading Root Cause

When you were hoping for Cancer

Note: This is in no way intended to trivialize Cancer and the devastation it wreaks on individuals and families. It is meant to relay a real life event and issues that surround chronic, incurable, illnesses.

Shawn is pretty much my hero. Beyond being an amazing husband and friend, the way he deals with his M.S. is inspiring. After twenty years and a secondary progressive diagnosis, he takes zero medications to dull the pain, provide energy, or help him sleep. The result is that he deals with non-stop pain, has to push through crushing fatigue, and most nights is lucky to get an hour or two of sleep. Most people would never do this, but the alternative would leave him a medicated zombie and he doesn’t want to live that way. He tried it when he was first diagnosed and hated it.

Continue reading When you were hoping for Cancer

Welcome to our RV Adventures!

I have thought for a while about what to write on this blog, as I have not wanted it to be all about RV-ing, or travel, or political, or any one subject.  Basically, I wanted a platform to write on that would allow me to express myself based on where we were in our encounters.  This presents an issue with choice, where I have a slew of topics and ideas and cannot settle on one.  As a result, I have redone the design of the blog many times, to the frustration of my friends, while I try to figure out how I am going to contribute to the overall prose section.

Currently we are in Florida at a RV park with some friends.  Over dinner last night I was relating about our time when we were camping at a Swinger’s resort. Continue reading Welcome to our RV Adventures!