You can’t be Cancer

No one ever tells you that you are pneumonia or cystic fibrosis. You are not rheumatoid arthritis or heart disease. You have diabetes, eczema, PCOS, or a row of stitches.

And for some reason, you are bipolar. You are borderline. You are Schizophrenic, depressed, OCD, or “mentally ill”. Once diagnosed with mental illness, it becomes part of your identity in most circles.

That’s one thing that bothers me in the public eye and I think it’s part of the stigma. When I was first trained as a personal care worker, I was trained that my clients are people first. That means that “He’s a person with autism” was a perfectly acceptable statement in that company; “He’s autistic” wasn’t. It was a model that brought dignity to the people that I was there to help. It allowed this person to decide if they were going to identify themselves as their illness or as something else. With this model, the person with mental illness can be anything they want to be still. If they want to be depressed, they can. Or they can choose to be a ballerina, an artist, or a lump in bed. If they want to be crazy, they can. Or they can choose to identify themselves as a person with mental illness and explain that they’d rather not talk about their diagnoses.

I like this model. I like seeing people be able to identify themselves how they would like to. I especially like it when people choose to identify as other than their illness. It gives us more purpose than to focus on our pain.

Focusing on our pain is happening this week. There’s a lot of reasons that may be throwing our lives into a tailspin. I kind of lied to some of you because of it. I cancelled appointments and shut down friend time because of a “family emergency”. That family emergency was an emotional dysregulation that has turned dangerous.

Recently, there’s been a lot of stress. 2 months ago, we moved into our RV and parked it at a couple of friends’ place. They helped us immensely to improve The Girl Next Door to at least a running status. A few weeks ago, they asked us to leave so that they could better serve their customers, who come to their business at the house. We were in the way, where we never had wanted to be. So, Jeremy fixed the fuel pump and we were on the road within hours of it being fixed. It was 2 days after they asked and way before the date that they had told us we had to be gone. Jeremy’s emotions started to get out of control then: when he took one sentence said as him being “unwanted”.

You see, when Jeremy starts to go away and the monster of his illness comes up, it usually starts to happen the most prevalently when he’s rummenating on something that can easily be misunderstood or taken the wrong way. You didn’t say anything wrong, or even mean. His dysregulated brain latches on to anything it can to torture him. Then, it plays that thing over and over again for over-analysis. He probably won’t say anything about it right away. He knows, logically, that his brain is being a jerk.

Next stress: Jeremy found out that his oldest son was in a hit and run accident 4 MONTHS AGO!! We didn’t know anything about it. He’s an adult and totally free to keep his secrets. What hurt Jeremy the most was that his parents knew about it and kept it from us. While his son wasn’t hurt, it reminds Jeremy of his ignorance of his son because his son chooses to cut us out and use Jeremy’s parents as a shield of sorts from life’s consequences. That hurts Jeremy; it reminds him that his adult child doesn’t trust his reactions. It also reminds Jeremy that his parents are coddling this adult child; that hurts too. Pain like this is a big stressor for any parent.

Jeremy’s younger son came to stay with us from Friday to Monday of the Memorial Day weekend. This may not seem like something out of the ordinary for most of you. However, this child has been dealing with mental health issues of his own. This is the first time in almost a year that he’s been in our house for more than a few hours, much less an overnight. There was anxiety on everyone’s part, Jeremy and his son the most probably. We all want a successful relationship. The trust that was lost last year is slowly rebuilding. I don’t know about them, but I want it to be back, darnit! I’m tired of learning how to forgive and how to renew the relationship. I can only imagine how the two of them feel about it. So, for 4 days, there was the constant stress of being a good parent and learning how to trust and how to earn trust again.

On top of all of this, Jeremy’s doctor changed his meds last week. That means that this week is when we’ll start to see some of the changes that this new dosage should bring about. In the past, on this medicine, there is an initial spike of mental illness activity when there’s a change. Eventually, it evens out and Jeremy is back to himself again. And while we’re in this week and maybe next week, there will be some loss of stability with the change. This will be happening for Jeremy for a long time. He and his doctor started him back on this med back in December. He’s been very slowly and steadily increasing the dosage since then. It’s a hard place to be, the middle of a med change.

Some medicine changes happen very quickly. When Jeremy went off of Lamictal before, it was an instant thing. His doctor told him to discontinue immediately and come in for a consultation. They changed him to Lithium and that was that. Some happen more slowly. Sometimes, finding the right medicine for anything takes forever. Jeremy was on Lithium for 4 months last year. It didn’t help; in fact, it may have made things worse when he was on it. Imagine that happening 2, 3, maybe even 4 times with different medicines. This can be a multi-year process for some.

This week has erupted beyond our normal feeling of “off-balance”. Every day there is usually some uncomfortable feeling of anxiety or neuroses from one or both of us. Usually, we’re able to pull the thought train back to forward and make life work. On a normal week, it’s hard to get day-to-day life finished, but not impossible. The laundry may pile up for a few days, the bills may get paid only after a reminder letter, the dishes look icky for a whole 2 days instead of getting washed daily. It isn’t usually so off that we can’t live.

Over the last month, that hasn’t been the case. We’ve been living on bought meals and restaurants because we don’t have the foresight to make dinner. We’ve been allowing the dishes to overflow the sink. Our laundry took 5 loads the other day and I still have a basket full of dirty. We could really use the help of someone willing to help us organize, get things done, and lift our spirits. Let’s face it, isolation is another side effect of mental illness breaking down. It’s not as simple as just having the people we need in place to help. There’s arranging that needs to be done if those things are going to happen. Neither of us is up to that task. So, this week, it has all come to a head and we’ve had to try to hold the pieces together.

In the end, the month of May was extremely stressful on both of us. Jeremy hasn’t been able to regulate his emotions like he wants to. He doesn’t want to have outbursts and breakdowns. In turn, I respond by pulling inward, letting my self-care go, and riding the depression train. Neither of us wants this; we want to be happy and healthy. We are working together to find a way to make that happen. Hopefully, once we’re through this hard time, we’ll be able to go out and see you on the road again.

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Full-Time Times

This will be quick. I’m still reeling!!

Ok, first off, I’m sorry to our loyal followers for not writing more in the last month. IT’S BEEN CRAZY AROUND HERE!!

Let’s start with The Girl Next Door. She’s full and being worked on as much as possible. Jeremy has been spending days with Jason, our new neighbor, working on the engine, the electrical, and the fuel issues. She’s moving better than she was when Jeremy crawled at 20 miles an hour into Jason’s driveway; she’s also still not in what we would call “mobile” shape. She moves, but not too quickly. I think Jeremy said he got her up to 35 miles an hour. They’ve changed spark plugs, checked for fuel vacuums, and emptied the old gas. They’ve also re-wired quite a bit of our internal work, including the male end of our 50 Amp electrical hookup, which promptly created some sparks. Now our microwave doesn’t work anymore, but there was no further fire. Thank God.

We’re still not “moved in” either. We haven’t quite had time to work on going through all of our stuff stored at Jeremy’s parents’ place. So there is quite a bit of stuff that is stored there that we want to fit into the RV. That being said, it might never happen. She’s not quite organized inside yet. We have stacks of clothing and stuff on the kitchen table, the couch, the doghouse, and in the passenger seat. Any advice would be helpful. Even more helpful would be a life coach or something to come and go through this stuff with us!!

Jeremy is still working on the rollercoaster of Lamictal reintroduction. This medication works well once it’s up to therapeutic level. The problem is that he has to go very very slowly toward that level because of his rash last July. We’re hoping he’ll be all the way up to it by June. Right now, he’s on the down turn from the most recent increase. By next week or the week after, he should be stabilizing again and we’ll see where he’s at with is moods. In the meantime, he’s riding a wave of cycles, anxiety, and coping skills.

My job change went smoothly for the most part, but I’m now waking at 4am, driving Ruby over an hour one way, and not getting home until 6pm. Most days, I’m tired.  Even though I’ve done this job before, those are old brain cells that haven’t been used in 10 years. Even though it’s a change, I still feel like going back to the QA job is like moving home. There’s a familiarity of the lab; over half of the people in the lab are the same people that were there before. Every single shift has someone who was there when I was there 10 years ago. Nonetheless, I’m enjoying being back on someone else’s payroll.

It’s also a huge change in routine for getting dressed in the morning. I can’t stand in the bedroom anymore, so have to dress in the living room in the mornings. Eating is a change; I’m very close to the bedroom, so I don’t want to use the blender for fear of waking him.  Showering and bathing is different too; we do not have water in her yet for fear of freezing, so we need to go to the gym or the neighbors’ place to shower. Just getting out my clothes has changed because I need to do it the night before so that I don’t have to crawl all over Jeremy every morning.

I’ve been missing meds right and left. With the change in routines, I forget almost daily. Because of this, my depression symptoms have been going a bit haywire. And I’m drinking coffee again too. I need the boost in the morning to be able to drive. Luckily, I found a great recipe for Unicorn Fuel, so I don’t need to add sugar to my diet to enjoy my boost. Food is a hard thing to keep up when there’s this much spinning around, but we try when we can.

We are both in deep athletic training right now too. Jeremy is getting ready to do the Eau Claire Half Marathon in May. My next race is June 10th in Chicago for the Spartan Sprint Obstacle Course Race. Running has become a regular event around the house. Being parked in a new town makes it interesting to find trails, roads, and routes that work for us. I have an extra bonus of strength training for my race too, so I’ve added some of that at my new job; they have a gym available to me.

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Jeremy took The Girl Next Door once to dump and checked out how she’ll look when she’s finally parked in one of our summer spots. This round barn is one of the coolest back drops we didn’t ever imagine would be a parking spot.

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All in all, this new life is working for us, even if we are a little frazzled. Once we’ve gotten in a groove, things will be easier. We are still in the stage where you don’t know where anything is because you just started keeping it there. We’re learning how to prepare for moving her, we’re learning how to take care of the business without me there, and we’re learning how to interact with each other when we’re exhausted from our busy training schedules. We’re both still very happy we made this switch.

Now, as Jeremy plays with the neighbors’ dogs (Dying of cuteness!!), enjoy your life, live healthy, and we’ll see you on the road.

The Wheels on our House Go Round and Round

Jeremy has taken to singing this song now that we’re on the way to our “new home” for The Girl Next Door. Please don’t sing “The Wheels on the Bus” to me or mention the wheels on our house… I think I may lose my mind.

It’s amazing how fast this all is happening!

Once the windows were done, Jeremy wanted to start moving as soon as possible.

So, one day I came home to this. The Girl Next Door was parked in front of our townhouse. She just barely fit in the yard. You can see in the big picture that she really didn’t get to be level while there. Our yard and driveway are slopped so that rain and snow melt run away from the building. That kept her a little off kilter. So, front door to front door, we started moving in.

Jeremy and his parents had wrestled our regular queen mattress into the bedroom. It hangs a bit over the end of the platform, but it is so much more comfortable than the foam mattress that existed. We don’t know if it was the original from 1990, but we wouldn’t have been surprised. Now we have a pillow top queen mattress stuffed right in where it’s supposed to be.

Jeremy and I moved most of our things from the townhouse into the belly of The Girl Next Door. We made some organizational decisions on the fly, like who gets what closets, where the spices go and if we’re going to use the under cabinet appliances or not. So, the toaster went bye bye, the “pantry” became Jeremy’s closet, and the spices are above the sink.

Saturday and Sunday nights, we decided we were going to try it out. This way, if it was too cold, something broke, or we changed our minds unexpectedly, we could just go back inside and sleep in the guest bed. It was actually very pleasant with a heated blanket for most of our heat. The more of our stuff we moved, the warmer the place stayed. It also helped that I finished all of the Reflectix window insulators.

Monday morning, Jeremy had gone to workout when there began to be a knocking on the townhouse door, then on the door of the RV. When I opened it, I found our association manager. He told me that we needed to move the RV somewhere else; that it wasn’t allowed and there had been complaints. At the same time that he was talking to me, Jeremy got home. So we jumped into action.

Everything that would fit from the counter and table got thrown into the sink. Jeremy took off the window insulators and started scraping off the frost that had accumulated both inside and outside of the windows and windshield. I put the larger things away where we planned to keep them later when we move around, including the basement, the closets, and just tied up in a chair. Once Jeremy unplugged her cord, we were on our way to our next destination: our friends Jason & Ona’s house.

Jason & Ona will be helping us with making sure she works well. Jason has some experience working with big engines like this. He was the one that helped so much with the exhaust back in February. They’ll also help us out a bit to make sure the appliances and electrical system are working correctly. We’re more than a little grateful for their hospitality and help.

We weren’t able to stay long when we dropped her off at their house. Jeremy had to get back for a massage immediately, so we left her sitting in their driveway and Ruby took us to the office. That night, we got home and looked around.

Our living room, guest room, and kitchen were 90% empty. We were excited that we got that much done and ready to take on the next steps of moving. I finished going through my clothing that night.

This morning was the first time we were able to eat at home since then. We found out a very important bit of information about moving gradually… keep the spices and most food where you’re living!! For eggs and porridge, we had no cinnamon, nutmeg, very little ginger, and our pepper is getting very low; we have all of our walnuts and almonds in the RV.

Jeremy picked up what we needed most at Walmart and we went without the other stuff. When I roasted our spaghetti squash for dinner, I did so in a cast iron sauce pan because all of our baking sheets are in the RV. We even made our spaghetti sauce in the microwave at the office because we ran out of time from having to run to the store for seasonings.

We won’t have to worry about this for too long. We are planning on moving into The Girl Next Door mostly full-time starting this weekend. The rest of our things will be moved and all that will be left to be done is cleaning the townhouse and giving them back the keys. T-minus 4 days to full-time. We’re both excited now and ready to have it done with.

There are still things to get rid of and there are communications that we haven’t had yet on the things that need to be done before we can be done at Jason & Ona’s place and move to our semi-permanent location closer to our office. No matter what, we’re happy to still be moving toward embarking on this journey together, no matter how far the mercury falls below zero. Stay warm all, snuggle your loves, and we’ll see you on the road.