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.

Advertisements

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.

17858403_1890296037873086_1720541414_o

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.

17837637_10210806446710370_236151364_o

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.

How does genetics fit in?

Genetics is the study of inheritance; it’s finding out what traits are handed down from lineage and what is environmental. Everyone is affected by genetics because we all have parents, who we got our genetic traits from.

Many factions of scientists track genetics through the generations. Most use a “genogram”for a reference for their research in one line or for one person. A genogram is like a family tree in that you put all of your ancestors, siblings, and relatives into the chart. Then, you track who had the trait in question and who may have had the trait but was unconfirmed. The creator may use interviews with family, birth & death records, as well as criminal records and past diaries to fill in the blanks. This is usually a good way to find out if a trait is environmentally induced or if it is genetic.

Talking about and noticing these types of traits gets me jazzed. I have my Bachelors of Science in Chemistry with an emphasis in DNA analysis & Criminalistics. Genetics was my favorite college course because the connections are so interesting. When you know a lot about a subject, it becomes more interesting. Plus, genetics is kind of a puzzle with clues as far as I’m concerned; it’s like a mystery novel.

It got even more interesting for me when Jeremy and I started talking about mental illness. He and I are both strong believers that mental illness can be both genetic and environmental. How this is described in the scientific world is usually comparison of expressivity and penetrance. In layman’s terms, expressivity is how much an individual displays a given gene trait and penetrance is how many individuals in a genetic pool are likely to have the gene for that trait.

This is where most average people hit a wall right now. There hasn’t been a phenomenal wealth of research done on the genetics of most mental illnesses. There are also a lot of barriers to proper diagnosis of mental illnesses because of the lack of research.

The National Institute of Mental Health, a division of the National Institute of Health (NIH) is trying to remedy that. They have greatly increased their research basis in the fields of mental health in the last 10 years. As a result, new medicines, treatments, and diagnosis protocols are being created every day.

Now, we are hoping to be a part of some of the research. The NIMH is currently running a research study called “Investigating the Genetics of Bipolar Disorder in those affected and their family members”. Finding this study has really opened our eyes to how our family members, primarily Jeremy’s family of origin, may be affected by Bipolar disorder. We’re hoping they will also partner with us to help with this study.

To really understand why we’re interested in it so highly, we need to talk some about Jeremy’s illness. He was diagnosed at 28 years old after years of struggle. He was divorced, had two children, worked the same job for 8 years, and had recently lost another relationship. When first treated, he was treated only for depression. He was given Effexor. As was common with this medication, when Jeremy still didn’t feel “well”, they increased his dosage. The more they increased it, the more his symptoms grew. He started having days and weeks of mania, very high anxiety and agitation, and delusional thoughts. One day he couldn’t take it anymore and he was taken to the hospital.

He ended up in an inpatient psychiatric treatment program. This is what you’d do for anyone with a severe illness; for severe pneumonia, they’d go to the PICU; for an infection they’d stay in the ICU. Think of inpatient treatment as the Intensive care unit for psychiatric cases. While there, he participated in many tests and many group sessions, as well as individual counseling. The psychiatrist determined that his response to Effexor was because he wasn’t depressed; he has bipolar disorder or cycling manic-depression.

Finding the right diagnosis makes it a lot easier to get the right treatment, but it is still not easy. Many of you have read my entry here about the mental illness in our life and the treatments we are currently seeking for it. There are hundreds more treatment options that we haven’t had to seek out yet. There are also a lot that we have tried that have not helped a lick. While in the hospital, the doctors tried many different medicines with Jeremy. Since going back on medication in 2012, there have been a few more added to the list. For some, they never find the “right” medicine for them. We are grateful that Jeremy’s found one that helped him.

Now, bring in the fact that his children struggle with illness too. The youngest is currently in residential treatment. Over the last month, the doctors there have reached out to see parallels between Jeremy’s evolution with mental illness and his son’s. In turn, they tried the medicine that’s been helping Jeremy. Lo and behold, his son has started to see some progress with impulse control and mood stabilization. That got me thinking of genetics.

When I started searching information on genetics and bipolar disorder, I found the study on the NIH site. Jeremy and I have discussed a little how his illness may be genetic. We have looked at his kids dealing with what the do, but we’ve also taken information from his family about some of Jeremy’s relatives and possible mental health issues.

Mental health is just becoming something that is viewed as a health issue instead of a stigmatized character flaw or weakness. In generations past, people were billed as “crazy”, “unstable”, or “psycho”. They were pushed out of society because of their odd behaviors or ideas. People with mental illness were avoided instead of being understood. There may well have been quite a few people who had some high functioning form of mental illness that were just outcast because of their odd life. Even in more recent generations, such as our parents, people with mental illness often didn’t seek diagnosis and treatment because of the stigma attached to it.

That’s what a genogram looks at. Jeremy and I both believe that doing this kind of exercise could be very telling for our family. We are hoping that this NIH study will accept him as part of the study; we are also hoping that some of his family members will join him in participating if they can. It would be telling to find out if there are genetic markers for bipolar disorder. To have a definitive way to diagnose this horrible disease would be one step in the right direction for a viable treatment.

Until then, we’ll keep doing what we can find that helps; we’ll be working on running the race that God has put in front of us. Stay safe out there, my friends. We’ll see you on the road.

When you fall off the wagon

We’re talking a proverbial wagon. Don’t worry; we did not go farm this weekend or anything. Although that would have been a great workout, had we done it.

A year ago, Jeremy and I were both very very dedicated to our health. As a result, he was at the lightest he had been in 20 years and I was at my strongest. We planned our meals ahead of time; we planned our exercise and followed through; we took our medicines daily; we spent time regularly doing self-care. All aspects of our life were kept at our healthiest options.

In March 2016, our youngest had some mental health issues start to take over his life. For the next 6 months, our life was filled with massive stress, doctors, and cops. The stress was too overwhelming for both of us. We doubled our counseling sessions. Jeremy and his doctor agreed that he probably should increase his mood stabilizer medicine. As a result of increasing too quickly, Jeremy got a dangerous rash and had to go off of the medicine that had worked for 2 years. This medicine is mostly to treat his bipolar disorder by keeping his moods in a “normal” range and help him focus better.

The new medicine to replace it was Lithium. Jeremy was on Lithium while he trained for the Twin Cities Marathon and I was training for the Rails to Trails half-marathon. A med change when there is little stress is hard. Noticing side effects and getting through the mood swings can be overwhelming. It’s triple hard when you have something that is a goal or some kind of stress in your life.

He made it through the marathon. He even had a pretty good time, even though he hadn’t trained as hard as he had hoped. For those that don’t do long distance races, there’s important information that you probably don’t know: the after crash of a race. Think of it like another life event: a wedding. You plan for months, you spend hours every day thinking of this event and planning for it. You may work to lose weight, make decorations, and pick out the perfect dress/DJ/location/cake. The day comes and you have a major high. You love your event and it goes off without a hitch. Afterward, you’re faced with a slight depression. You spend hours thinking “what do I do now?” and “There’s no purpose to my time anymore.” You looked forward to this event for months and now it’s just over. The same  happens with athletes after a major race/game/event.

Jeremy had that happen. On top of the medicine changes, Jeremy went through a pretty extreme depression. We don’t know if it was a side effect from the Lithium, a outcome from the kid stress, a downswing from going off of Lamictal, or the after-race crash. All we know is that his thoughts started racing, his self-talk got dark, and he became despondent about life in general. There were days that I had to help him get out of bed for work.

Needless to say, he was not doing any kind of exercise at that time. I was also still untreated for my depression. Between the two of us, it was hard for us to do enough thinking just to make ourselves eat, shower, and work each day. Eating healthy was the last thing in our heads. We were lucky if we made frozen pizza or mac & cheese; we weren’t even going to attempt salads.

So, what happens when someone is unable to be physically healthy? In our experience, not only does their physical health deteriorate, but their mental, spiritual, and financial health all suffer as well. It stands to reason that it’s hard to get out of that spiral. We had to keep going to work and we knew it. Thankfully, we were able to push through in that area.

We’re both pretty grateful that we have found some treatment that helped. I was put on Fluoxetine (Prozac) in December. It made it lots easier for me to get out of bed, do the work I need to do, and help him with what he needs. He also went back on Lamictal in December. This needs to be a very gradual process. Even though he is still at a very low dosage of this mood stabilizer, getting off the Lithium seems to have brought him up out of the suicidal thoughts and deep depression. We are functioning again, that’s the important thing.

Something to realize though is that “functioning” is not the same as “thriving”. It was something we talked about when we walked out on the land we plan to park on this summer. Jeremy’s lamotrigine dosage is still low enough that he’s not 100% stable. Counseling helps and the low dosage does help; it’s just not ideal yet. We are both about 30 lbs heavier than we would like to be. Neither of us are exercising as much as we need to. We’re still not eating as well as we’d like. Now that we’re functioning, we can start to address these issues that keep us from thriving. We may soon get back on track to be healthy in all parts of our life.

We start a new eating plan today with Clean & Simple Nutrition. We are hoping that a change in nutrition will give us a bit of a boost toward motivation. Within the month, we will both start training for our next races. We hope that you take some motivation to keep going, to get started, and to get healthy from our story. Stay safe and we’ll see you on the road.