Yesterday, my youngest, McKenna and I drove two hours east to The Dalles, my hometown. Almost all of my family still live there, plus the majority of my close friends. It was great to go back and visit. We originally went there to sell raffle tickets and event tickets to my daughters all star cheer fundraisers. The plan was to get there around 11am, and leave around 6pm. We ended up not leaving until well after 9pm. I was, and still am exhausted. I couldn’t just stay the night, because all of my meds were at home. In order to drive, I couldn’t take my pain pill.  It was a tough few hours towards the end, but we managed. 

You see,  I’ve had to learn to listen to my body. Even though I like to ignore that I’m sick, I have to strategize my plans around my illness. I had planned ahead for yesterday’s trip. I knew I had to rest the day before. Sometimes, for bigger events, I have to rest up for a few days to prepare. Then, depending on how the event goes, and what it is, I have to plan a few days, and even on some occations, weeks to recoup. It sucks, it sucks bad. 

Luckily, yesterday I just drove in to town, dropped my dog at the Pink Poodle to get groomed, and stopped at my my bothers house and visited a while. Then we went to my moms for dinner,  and then my daughters to visi. It was pretty low key. I had only gotten three hours of sleep the night before, (I was still pissed about the comments made to me on Tuesday about if I’d just be more active my disease wouldn’t be so bad. I had a rough time letting this go. I deal with so much guilt already, I don’t need other people making me feel like crap too. Plus I was excited to see my family and friends.) so I was very tired by late afternoon. Once we got home last night, I was still wound up, and in pain. I didn’t fall asleep until about 2am this morning, but I had the luxury of sleeping in until 10 am this morning. I am still hurting today, but we made it to the library (aka my new office). McKenna is diligently working on her math, and I am blogging. 

Due to this disease, I do try to plan my weeks with just one or two events. When we have big events, like our recent trip to Anahiem for All Star Cheer Nationals and Disneyland, I rested up for a week, and then crashed for a few weeks after we returned. The same thing happend at a Christmas. Now that I know this, I plan for it.  I just get so tired and fatigued after a big event. I really push myself to be as normal as possible. I want to keep up with everyone. I don’t want to hold anyone back because I have to take it slow. This new way of living has been an adjustment for our entire family, but we are learning to make it work.  

One of the best  things that I have found helpful to help others understand is The Spoon Theory. If you haven’t heard if it, I highly suggest googling it and reading the story. It really resonates with people suffering from all kinds of illnesses. 

I would love to hear from other people how they handle plans and big events. Please leave your ideas in the comments. 

First off, I feel like I should have some sort of music of anticipation playing as I write this. Instead, I’m sitting here quietly in the library. How the the heck did we get here? Another lifetime ago, I’d never see myself sitting in a library to use their wifi. I’ve always been a hard working, active person. In fact, when I was single, men used to tell me I was to intimidating to date. I had my own successful real estate business, my own house, a new Dodge Ram, a new Chevy Aveo for my daughter, and a Harley Davidson. I had three kids that were very independent. We traveled all the time, and had a lot of fun. I didn’t really need a man, but I was lonely. I wish I knew then, what I know now. I’d not have been in such a rush to find someone and leave my happy lifestyle. However, I was in a rush. I was lonely. I joined eharmoney.com, match.com, and any other .com’s I could. I went on a few dates, but kept talking to this one guy in Idaho. He was a christian, and I liked that. We dated a short while before deciding we wanted to live together. However, he didn’t want to live in sin. I was on board, so we got married. This was a huge mistake for both of us. Just after the first few weeks I knew it was a bad thing, but I’d given my house and business up.  I couldn’t go back.  For the next three years, we lived a very boring, sad life. Unfortunately, my kids did too. I lost all my things, my bike, my truck, my daughters car, and my self esteem. I finally a had enough and decided to end the marriage.  

After I moved out, I met someone, my husband now.  He has saved my life. Literally, and figuratively. Travis and I met after he finished going to Northwest Lineman school in Meridian, Idaho. He was working with a company that had him traveling a lot, and so we only saw each other once a month or so.  I’d never believed in love at first sight, but that is what it was with us. Just within the first week we knew each other, we both knew we were meant to be. Both of our marriages had recently ended, and so the timing was right for us to start our new life together.  He got a job that transferred him to Texas. He moved down in January of 2012, and I followed, along with two of my kids in March. We lived in West Texas for the next two years. It had it’s ups and downs.  We were only able to see his son once during that time, which was very tough on both Travis and his son. I was diagnosed with a rare, serious autoimmune disease called Wegener’s Granulomatosis.  I had to undergo surgeries, and chemotherapy. My mom, and my oldest daughter had to come stay with us a few times to help out. It finally was very clear that we needed to move back to the Pacific Northwest to be closer to our families. 

Even though Travis was making a good income in Texas, the cost of living was taking it all. I was working for Aflac, and doing very well, for as sick as I was. When Travis got the opportunity to move to Idaho, we jumped at it.  It took all of our savings to move back. His new job was not what it was said to be, which is what we’ve found to be true with most jobs in the Lineman field. We were back to square one, and a bit scared. Within a few weeks, my super-husband had a found his new career path, in his old career field as glazier and installing automatic doors.  We made plans to move again, from Idaho to Oregon. 

I’m so glad we did. Although things are bit different than we’d planned, we are finally on the right track. I have a great team of doctors at OHSU. To save money, we bought a new RV to live in. One of my best friends let us park it at her place, and we did that for nine months. When she moved, we moved it to Travis’ best friends place, and are currently there. We are waiting to buy a fixer-upper this summer. This will be our new fresh start. Once again we will have a home of our own. Eventually, will have our dream cars/trucks/toys again. We will rebuild our lives together. I try to think of it like an adventure. It may not seem glamorous, but it will interesting.