A Million Ideas

When life is busy, it’s easy to come up with ideas to write. Ideas jump out of the minute details of life. The only problem is that my brain doesn’t flow to typing when I am stressed.

You’ll remember that we recently (well, a few months ago) had Jason (16) move in with us in the RV. He’s had quite a few struggles so far in his short life and we were all hoping this would be a new start. At first, everything went along for a few weeks. Then, the bottom dropped out. I haven’t written about it because I just didn’t have the emotional energy.

Since that day, there have been multiple law enforcement involved events, as well as a few hospital visits. Jeremy took himself to the hospital twice, just to be sent home. These million ideas don’t flow from me, but they do get lodged in his head.

You see, with Jeremy’s mental disorders, he has a hard time letting things go. He also has a hard time sorting through the millions of ideas that already sit in his head. They all become jammed up when he gets stressed and collide in a horrific noise of anger and confusion. I have a feeling Jason has something like this happen too at times. Throughout the last few months, getting anything done was hard because their collisions were both happening simultaneously and being spewed out on each other.

Our place wasn’t a healthy location for Jason and it wasn’t healthy for us to have him living with us, just like his mom’s. It was toxic for everyone involved because of how he takes out his mental collisions and confusions. We (all of the parents in this situation) are not professionals and we are not equipped to deal with Jason’s myriad of mental illnesses, just as we wouldn’t be equipped to take care of a cancer surgery. Jeremy and Jason have both admitted that, when they’re amped up (excited, anxious, or angry), it’s hard for them to hear and see things as they really are. It’s not so much a loss of reality as it is a selective hearing that they don’t get to select. Then, that delusional state attacks them and tells them that they’re not good enough because they miss so much when they’re stressed.

That’s a dysfunction we’d like to change. We have multiple counseling appointments a week between all 3 of us and one of the regular focuses of these sessions is finding ways to deal with the delusions and the loss of memory tied to emotional dysregulation. #1 is to take breaks if anyone starts to get emotional. That’s hard when they’re already functioning lower because they’re the ones getting emotional.

That lower functioning has recently lead to some violence. Many forms of violence: physical, emotional, verbal, and property violence. Don’t know the difference? Ok, let’s address that:

  1. Physical violence is often what most people refer to as violence. In our house, it has recently come out as grabbing, shoving, punching, kicking, and spitting. Jeremy and Jason got into a physical altercation on December 4th. It resulted in Jason moving out of our tiny living spot into his brother’s house.
  2. Emotional violence. This can be paired with verbal violence, but does not entirely have to be. It could be a breach of trust. It could be violating someone’s privacy. It could be gaslighting. Intimidation is often an emotional violence tactic. It could be getting someone’s hopes up about something, then repeatedly disappointing them (most often a visit or something you tell them you’ll do with them). It could be just creating drama and picking verbal arguments. The emotional labor that’s necessary for these situations is staggering and makes it impossible to think of anything else.
  3. Verbal violence: Many people know this, but don’t talk about it as violence. It’s name calling. It’s swearing. It’s also gaslighting. It’s telling someone that their worth is nothing or that their hopes don’t matter. It’s the words someone uses to bring about emotional violence. It can be spoken, drawn, written, or digital. It can even be signed; with more than a middle finger sometimes. This violence has been part of our household for years. Many people don’t view this type of violence as as “bad” as other forms. Let me just tell you… It IS.
  4. Property violence is attacking your victim’s property in some way. Most recently in our house, stealing has happened. Jeremy came home from our vacation trip to find our business address locked, but had things moved around. Our electronics had been used. The Square credit card reader was stolen. The iPad had a factory reset done on it, deleting ALL of our apps and data. The safe had been moved, although not opened that we could tell because, thankfully, Jeremy had locked it. Jason is the only person other than us who knew where any spare keys were. He’s been hanging out with a man who has a felony credit card fraud on his record. I hope that man realizes that his parole can be revoked if Jason gets in trouble because of him. He could be charged with contributing to the delinquency of a minor if he let’s Jason keep coming around.
    Other property damage that’s happened is breaking or damaging someone else’s things. On the night that Jason attacked Jeremy, he also attacked Jeremy’s car. He was kicking and hitting it, which lead to dents. He was also purposely smoking in the car with the windows rolled down, so that it would smell up the car.  Jeremy and his oldest have put holes in walls before, both as intimidation tactics and property violence. Jason’s favorite form is to create more chaos. He will spread the contents of a car all over the yard or tear off the decoration from walls or remove the skirting from the RV. It’s a common occurrence that someone will steal money from others as a form of property violence. Property violence is a way to control someone just as much as emotional abuse, verbal abuse and physical abuse.

And that’s what it’s all about. It’s about controlling another person. That is disrespectful and creates many rifts in relationships.

I need to note here that this is NOT the same as a parent taking a child’s phone if they are doing something wrong or requiring a child to put money into an account to save for the future. It is not the same as a parent giving a child consequences if they are rude or disrespectful. It is not the same as an adult teaching a child by enforcing the rules. There are times when violence and consequences feel the same because no one wants either one to happen to them. The difference is that consequences are something that come because of our own actions. Violence is something someone enacts upon us.

We are sad that it didn’t work out how we had hoped to have Jason live with us. We will continue to love Jason and try to help him straighten his life out. We hope he will stop self-sabotaging by perpetuating violence and getting involved with people who lead him astray. That doesn’t mean we have to be in the way of the tornado until he starts to take responsibility. We will continue to work with his care team and hopefully, he will come clean and get straight before he has a consequence that is permanent.

So, it’s just Jeremy and I in the RV now. We are planning to continue to focus on our own health and wellness, trying always to help others when we can. Hopefully, you’ll join us. We’ll see you on the road.

A Head Full of Pain

On the Wednesday after Labor Day, I got up and got ready for work. Jeremy had already left to workout, so I had a fairly silent preparation. I thought my foggy head was just from it being 5am and the remnants of a bad headache I had had the day before. As I walked out the door to get to the car, I was reminded that sometimes headaches don’t just go away; they erupt.

I sat down in a lawn chair we have just outside the doors and the world spun. My headache had morphed into a migraine. Now, I don’t get migraines extremely often, but when I do, they are not usually put at bay by a mere Excedrin Migraine, which I did take immediately hoping that it would put me back on my feet. I ended up having my hopes dashed an hour later and informing my employer that I would not be going to work that day. I then crawled back into bed and slept for most of the rest of the day.

Knowing what a migraine feels like often gives me a small bit of insight into how Jeremy and others with bipolar and borderline personality disorders must feel sometimes. I’m lucky; migraines and severe headaches are accepted illnesses and I can at least get some sympathy from people.

There’s always someone that doesn’t get it, though. Where they get “We all feel sad sometimes” or “I have a hard time relating to people sometimes too”, people with migraines hear “Yeah, I get headaches all the time.” Note: Bipolar Depression  and Borderline Personality Disorder are not the same as sadness, just as headaches are not the same as migraines.

Let me show you a physical example: You have been reading my blog. I assume that most of you are reading with a fair amount of ease, maybe with glasses, but for the most part, it’s comprehensible. Now, look at this: 785a97667c645119a46dc4911af7088f--migraines-quotes-chronic-migraine-quotes

Do you see the difference now? And this examples is if the migraine is a minor one. When mine are severe, the center of my vision is entirely fogged out.

Years ago, I found a video that helped me understand a little bit of what Jeremy goes through. When I showed him the video, he told me that it was the closest he’d seen to capturing how he feels and it’s still a tad off the mark. Check it out here: What it Feels like to Have Borderline Personality Disorder.

I didn’t really get it until I watched this. Then, I went on a YouTube binge to try to understand, to try to find treatments that might help, and to reach out to those that I finally felt that I might understand a little better. I got it now that his outbursts, mood swings, and self-deprecation were just an outward expression of his head full of pain. My outward expression was sleeping, dimming the lights, and putting on my fuzzy sweatshirt. On days when his illness was taking hold, he became sullen, lost control of his voice inflection, and was unable to sit for more than 5 minutes. When mine is bad, I can’t get out of bed, cry a lot, and ask him to put on headphones instead of sharing his videos.

Either way, invisible illnesses are harder than they look. Those of  us that have them often fill ourselves with pills to be able to make it through a day at work (as I am doing today, since the remnants of my reasons for staying home are sticking around today). We may take longer breaks than others. We may need more praise and motivation speeches. We don’t want pity and we might just want you to listen for a little bit when we’re tired of explaining that our bodies and brains are rebelling against our intentions. Thank you to those that try. Thank you for reading this post, whether you’re struggling with it or it comes easy to you. I know better than many how hard reading can be some days. Health and happiness to you all; we’ll see you on the road.

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.

Jack is not the answer

Alcohol is a central nervous system depressant. The reason you feel so good when you drink alcohol is that your heightened state of anxiety or inhibitions is reduced. This helps the brain and body to feel calm. Go too far and the average person deals with majorly reduced function in your body; slurred speech, tripping, blurry vision, and reduced mental capacity are very common. There can even be a reduction in respiratory and circulatory function, leading to a slowed heart rate, dizziness, and possibly death.

There’s another side effect for those of us with recurring depression: the depression can recur because of the alcohol consumption. It’s usually pretty short lived if you continue taking your antidepressants, but for some it can lead to a cycle of feeling good while drinking and drinking again once the depression comes back.

If you couldn’t guess by now, I had some drinks this weekend. A few were Friday night and another Saturday afternoon. By Sunday around noon, I was sad sad sad and hurting. The upside was that I knew what caused it. Bad food and added alcohol were a bad combination for me, I found. I only really knew because I’ve been eating so well for the last 2 months.

Back in January, Jeremy and I started a new lifestyle with our food. We decided to begin eating a mostly paleo diet. This isn’t a diet in the sense that we’re going to do it for a while and once we’ve lost some weight go back to the way it was before. It’s our diet in the sense that it’s what we eat and what we plan to eat in perpetuity. This means no sugar, no grains, no alcohol, and no mass produced dairy.

It’s funny how easily this transition went for us. Yes, there was 5-6 days of “withdrawal” symptoms, but all-in-all it was easier than any other “diet” plan we’ve been on. Part of the reason is that we are both meat eaters and love vegetables. The hardest part for me was chocolate; for Jeremy, it was eating fast food. And now neither one of us craves either of those.

I’ve been craving salty and spicy things. Jeremy NEEDS his unsweetened cranberry juice and bulletproof coffee. So, when the opportunity for bad food came up, we both took it. We are paying for it this week. Thankfully, we’ve been able to get back on track and feel a little better. Jeremy went for a few runs to sweat out the nasties. I have been drinking a lot of water and eating as clean as possible. It’s funny how fast things turn around when your body knows how to clean out, too.

The way the “cheating” on a more strict diet effects you can be beyond the physical responses your body has. Depression can recur because of the feeling of failure. I know that Jeremy and I both had a downward turn in our self-esteem when we weren’t perfect. We needed to be reminded by each other that this isn’t a one time thing; that this is a lifestyle change. We needed to be reminded that it was ok to make mistakes and that it was ok to have our favorite “cheats” from time to time. That 80/20 balance of being able to still have a higher quality of life was more important than the bite of chocolate we just had or the piece of bread or the drink of alcohol. When you’re battling with a mental illness, falling from self-esteem can be a hard spiral to get out of. We need to be careful how we speak to ourselves and to each other. As the years have gone on, both Jeremy and I have gotten better and better at discussing these types of things in encouraging ways.  I’m grateful to have him to help me up when I’m down and to work together on life.

Just dealing with my depression, our self-esteem issues, and our athletic pursuits has been enough to motivate us to keep our food under control. What do you do to keep yourself feeling well and performing at your peak? We’re looking forward to hearing your thoughts. We’ll see you on the road.

In Need of Progress Reminders

I think that sometimes, God reminds us of how far we’ve come by sending us back to where we were for a short time.

This weekend was an awesome weekend for the most part. Friday was a day fully dedicated to working on The Girl Next Door. I’ll write a whole entry about this week’s work on her soon. Let’s just say it was a lot of work and very satisfying.

Saturday, we worked on her in the morning. After doing as much as we could, we left to attend the Minneapolis RV vacation & Camping show. We had a TON of fun there. Next year, we will probably take either one whole day or come back for more than one time. We really enjoyed looking at new models of Class A, B, C motorhomes and travel trailers. We’re not much for pop-ups or 5th wheels, so we stayed out of them. We dreamed about what we might buy in the future and got a few ideas for The Girl Next Door. Catch us in 10 years when we’ll buy the 2017 Thor Vegas RUV Class A or a 2016 Pleasureway  Plateau XLMB Class B. They were both glorious. Plus, we were super excited to get to meet The FitRV after months of watching their videos.

After the show, we had some yummy food at Good Earth. We have found very good paleo options at stores that celebrate local suppliers and organic food. I had a wonderful blood orange smoothie, a Go Green lemonade (kale, spinach, & honey added), and some yummy BBQ pork chops over greens. Jeremy had a chopped salad that looked delish. And when the delightful dinner was over, we went to see one of our favorite local bands play. Dancing the night away is just as fun at 34 as it was at 21. I just don’t drink anymore, so I enjoy the music that much more. Good for Gary plays so many great dance tunes that all 4 of our party got on the floor. There was even a return of the BackStreet Boys that Jeremy danced to. What a goofy guy on the dance floor; that’s why I love him.

At 2am, we rolled into our friend Sarah’s place to stay the remainder of the night. All 4 of us quickly passed out, not being used to this kind of late night. We all slept pretty soundly and woke by 9am. Erin and I went to a local church, Hosannah! Church in Shakopee. It was definitely a style of church that I enjoy and I think I might go back the next time we stay over at Sarah’s too. Church gave way to breakfast; Wampachs had a great special for both of us: cajun eggs benedict. Yum. After some more hanging out at Sarah’s house, Jeremy, Erin, and I headed to a late lunch at Merlin’s Pub where there was mussels, tater tots, and sausages galore.

That was the extent of the wonderful weekend we had. Once we got home, things got hairy. On the way home, Jeremy had some conversations with his son and ex-wife. This tends to get him on the defensive in the first place. The anxiety of co-parenting can often be overwhelming. On top of the anxiety of this talk, he got more than one instance yesterday of his decision making ability being undermined by other adults. When he got home, the stress had taken over his ability to cope. He lost control of his temper and went into a tailspin. There was some yelling and swearing. I was not devoid of responsibility when it comes to the ramped up state of things. Between both of us not sleeping as much as we should and both letting go of control of creating our own food, we did not take good care of our bodies. I was caught very off guard by this turn of events.

You see, I had begun to take Jeremy’s good state of mind for granted. For over a week, he’s seemed very stable. He brought me breakfast in bed three times last week. He laughed, danced, and joked around. He worked hard, played hard, and slept when he could. We had a phenomenal weekend of happy times, fun work, and building our future. It’s easy to fall into a feeling of security in that. It’s easy to miss the early signs of a trigger. It’s easy to take for granted the stable times when they last for a few days or more. That state of complacency makes the meltdown that much harder.

Boy, it was hard for me. I did not deal well the way I have in the past. As a result, Jeremy and I spent the night struggling alone. Trying to be around each other was way too hard. We did apologize to each other; our mental health and relationship were able to turn around after some cool down time. It was just too tense to spend the time together. We’re lucky to have quite a few options when it comes to nights like that. We have friends and family that understand our situation, we have an office that gives us some space to cool off, and we have a whole bunch of great places to stay in our town. Right now, we also have a second bedroom in our apartment. We’re lucky enough even that The Girl Next Door even has extra beds in the living area of the coach, so we could sleep separately if we need it. That was one of the selling points for me: extra space if we need to sleep in more than one bed, whether that is for guests, the boys, or a night break.

We are still both very blessed to have each other. We are good at apologizing; we are both good at making amends. Over the years, we’ve learned to forgive. That’s part of our faith, but even more, it’s necessary to keep our marriage afloat. When mental illness is rampant in a marriage, forgiveness becomes an every day event. There are times that the forgiveness is small; there are times it is very very significant as this one was. Sometimes it is as little as forgiving the dishes only getting half put away or dropping something on the floor. Other times, one of us is apologizing for a major monetary hit from damage done in a rage or in an anxious outburst. Sometimes we risk our relationship by saying hurtful things. Other times we are remorseful for our massive insecurities stemming from past abuses. No matter what is going on, we have both agreed to communicate and forgive. I am bone-of-his-bone and flesh-of-his-flesh; we are united by marriage and need to work through those inconsistencies until we are one.

No matter what kinds of things hurt you, be ready to forgive. That is something that will always help both your mental and spiritual health. Embrace letting the desire for revenge go. Open yourself to new opportunities by releasing cherished wounds. Let yourself chase your dreams and we’ll see you out 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.

God’s Plan

I’m a very spiritual person. Whoa… whoa… don’t run away yet. I swear I’m not going to start badmouthing anybody. I love people, whether you’re spiritual or not; atheist, agnostic, dont-care-ist… I accept you where you are and would love to hear your side and thoughts of anything we talk about.

I’m a born-again Christian. (Again, please don’t leave…. hear me out) For those of you that the term “born-again” sounds weird to, it is. Those of us that say that don’t mean we entered back into our mother’s womb. The idea is that we had a second “birthing” or awakening to God’s plan in our lives and that Jesus of Nazareth is our Messiah that will build and maintain the relationship between us and God. We have accepted this awakening as truth to us and apply it to our life.

I used to be very religious. I went to multiple Bible studies, church every single week, volunteered as a greeter, taught Sunday school, and attended Women’s retreats. I studied my Bible every single day and got down on myself if I didn’t. It’s been a waxing and waning kind of style throughout  my life. But this style of “religion” was not fulfilling to me. I felt like I was looking outside myself, outside the Holy Spirit, for my beliefs. There are verses in Hebrews 5 & 6 that talk about being yet a child and needing to be reminded of the basics over and over again. The most powerful for me in these chapters are Hebrews 5:11-13, “11 We have much to say about this, but it is hard to make it clear to you because you no longer try to understand. 12 In fact, though by this time you ought to be teachers, you need someone to teach you the elementary truths of God’s word all over again. You need milk, not solid food! 13 Anyone who lives on milk, being still an infant, is not acquainted with the teaching about righteousness.” I was doing all of these things, spending hours and hours and hours being taught by others. What I really needed was to lead myself; I needed to mature past being fed by others and start feeding myself. Let God carry me some instead of my faith in the schooling and leading of other people. 

I’m not very religious anymore. I want to know why we do the traditions we do and I still do some of them if I like them. I don’t regularly go to church. I do often watch and listen to podcasts from good preachers that are teaching more than the basics. I weigh what they say against what my study of the Bible has shown me. I feel reading my Bible, praying, and living my life the way Jesus would have is what God plans for me right now. I try to live every day of my life in a way that makes people think “There’s something different about her. I need to know what it is.” I will talk about my faith if people show some openness to it. I also will not often share the other parts of my religious beliefs with someone who doesn’t believe that Jesus is the Savior of the world from Hell and the grave unless they ask me.

Whatever you do with your spiritual life, do it because it’s right for you. Talk to your higher power (mine is the triune God of the Bible) or yourself if you don’t have one and really decide if this ambiguous “religion” that you’re practicing matches your values and beliefs.

For my own spiritual health, I need to be relying on God for my teaching and my growth. I felt I needed space from organized religion. I’m glad I’ve taken it. I have learned so much about myself in relation to God and His world through this process. I’ve learned to assess the reasons for a Bible book’s writing before I apply it to my life. I often ask myself “Was this written for all of humankind, including me? Or is this more of a history written for the people of that time?” That’s a big question. If you don’t know, maybe find that out before you read a book. There are so many things I’ve learned from asking that question. And ask yourself “Does the God/power that I’m modelling myself after show any of the traits I’m being told are part of my ‘religious duties’?” That’s an important one too. Celebrate with your spirit and you’ll find truth. Be kind, be patient, and show care. Stay safe, my friends, and we’ll see you on the road.

New Year; New Life

I am the same person that I was yesterday; you are too. The only differences are that we’ve learned things that we didn’t know then. We may have learned good things: knowledge, love, efficiency, patience, kindness, wisdom, how to avoid cheesecake. We may also have learned bad things: pain, hurt, betrayal, anger, loneliness, and ignorance. In the end, we are still the same people; we have the same minds, the same bodies. We might have changed what we do on a daily basis or the way we wear our hair. All of these things aside, I am the same person today that I was a year ago with a lot of things I’ve learned.

I learned that my family was struggling so much more than they had let on. I learned that our kids were both struggling with drugs. I learned that my perception of what my husband and his children go through every day is not the whole story. I learned first hand what it is to have your brain attack you. It’s not a physical battle when someone is struggling inside their brain. Fighting with your own delusional thoughts is exhausting and hit my family this year. When you have cancer or diabetes, muscular dystrophy, or asthma, there are physical symptoms that show on your face, hands, and speech. You may slur, you may be unable to walk, you may throw up, you may have a hard time breathing. You may have to use a wheelchair or walker. Other people can see those symptoms.

When the war of mental illness is involved, it isn’t so visible. The vomit is an emotional vomit that often comes out sideways that has nothing to do with the person you’re spewing on. The slurring is in your inability to stay on one subject for long. The stumbling is in how you treat the people you love, even though you really want to show them love and respect. Your brain may tell you that it isn’t worth it to get out of bed today; that you are better off staying in the warm dark and letting your job fall away. Your illness tells you that your psychiatrist doesn’t know what he’s talking about and that the drugs do a better job than pharmaceuticals. There are no wheelchairs for someone who is so depressed that they are paralyzed. There are no walkers to help you find the thoughts that got lost somewhere in the racing conversation of your brain.

Thankfully, we have doctors that are beginning to know how to help my family. This year, we were able to find some stuff that is finally helping. I got some antidepressants that help me feel like a real person again; I can actually get out of bed daily, smile when something’s funny, and I am  not having random crying sessions for seemingly no reason at all. Jeremy’s doctor and he have decided to go back to the medicine that worked for so long even though he got a rash from it. Hopefully they can increase it slow enough that no rash happens this time. He also found a chiropractor and nutrition doctor that is helping him do better to fuel his athletic pursuits. The current doctor for our youngest took Jeremy’s past into account and found a medicine that seems to be helping him feel like himself for the first time in 2 years.

This year, Jeremy learned that he can do so much more than his brain tells him that he can. He ran his first marathon in June. He did multiple half marathons, tons of 5ks, and Ragnar Great River. Jeremy participated in 3 triathlons, one duathlon, and hundreds of group fitness classes. He ran his second marathon at the Twin Cities Marathon in October. This year, Jeremy continued his weightloss from last year; at his lightest, he was 215. He’s learned that Lithium is not a med that will work for him. He learned by gaining 25 lbs on it and experiencing some pretty severe depression symptoms during his trial-and-error phase of his med change. He learned millions of hours worth of information about RVing, motorhomes, fulltiming, and heaters. His phone  has been stuck on YouTube videos for about 6 months. By the time we move in, he’ll be an expert at all things RV.

We learned to coexist in work and home life. We learned a little harmony in our life; we learned a little struggle. We learned that 1200 sq. ft. is just too much space for the two of us. We learned that we have WAY TOO MUCH STUFF!! We learned a little bit of Spanish by using the Duolingo app. We learned to lighten up and to relax some. We learned that we want to have a life, not just be alive.

We are looking forward to 2017. Both of us have some physical goals, financial goals, and household goals. Resolutions aren’t our thing, but we do review our goals regularly and today is as good as any day to do that. We hope that everyone has a safe New Year’s Eve. Stay warm and we’ll see you on the road.

A Mexican Nightmare… An education

I talked in Part 1 about all of the preparation I did getting ready for a working vacation on a client’s medical travel. This is a first time for me. I’ve done 14 years of personal care work, but never had a client pay for me to travel like this before.

So, we left Monday, Dec 12 with high hopes of a good trip. Our cab came just a tiny bit late, but still got us to the airport 2 hours early. Our check-in at MSP went without a hitch. Checking our bag in was 5 minutes. TSA spent a total of 8 minutes on testing the wheelchair. There were almost no lines and we were even able to get a snack on the way to the gate.

Here’s where we need to go over the difference between travelling with a wheelchair and without one. Here is my experience without a wheelchair: You get to the airport 1 hour before take-off. Check-in takes a maximum of 5 minutes, bag check another 5-10 minutes, TSA maybe 10-15. If you’re running over on those, you’re totally able to run down the stairs, up the escalator, and through crowds to get to the gate, where they will be loading by this time. You board just by handing your boarding pass to the gate attendant and you find your assigned seat. You have no need for anything extra beyond a seat and a spot for your carry-on. Total time from curb to boarded: 42 minutes.

Now, add a wheelchair: First off, the preparation is so much more. Before you buy your tickets, it is prudent to call ahead to the airline and see what size of aircraft is right for your needs. Wheelchairs, especially power wheelchairs, often take up more space and need extra support from staff to get the client on and off the plane. So, you spend an hour on the phone with the customer service of your chosen airline. If you “shop around”, you need to do this more than once. You also should find an assistant to come with you to help carry bags and direct the airport staff as to your needs. You’ll be tired, you don’t want to do this yourself. Then, you need to get to the airport at least 2 hours early. Here’s why- Check-in takes 5 minutes, as usual, with one extra click and double checking that there’s some special accomodations. Bag check takes 10 minutes easily because you have to explain to the check counter that you also have a power wheelchair and ask them to call ahead to make sure there’s an aisle wheelchair available. TSA usually takes between 20-40 minutes, depending on how your prep went. Sometimes, you can do TSA Pre check, so that helps cut down on time. If you have dry cell batteries (which many modern wheelchair companies are going to) or you have a manual chair, you cut down the time a little too. But, TSA needs to wipe every surface of the chair with a small tab that tells them if there’s explosive or drug residue on the chair. They also need to pat down the inhabitant because they’re unable to see any bulges that may exist. After TSA, let’s say you need the bathroom. You need to wait an extra 5 minutes for the special stall. Not only that, if there’s stairs, escalators, or crowds, you’re going to take double time to get to where you’re going. Elevators are notoriously slow; picking your way through a crowded terminal can be even worse when people’s eye level is above your head. By the time you get to the gate, you hope that it’s still before they start boarding. You have to pick your way right up to the gate attendant and warn them that you’ll need an aisle chair. Often, no one was informed of this, even though you’ve taken proper precautions. They call for customer service to send down an attendant and an aisle chair. You wait until the gate is opened and are the first person boarded. Hopefully, when you got your seats, you thought to put your assistant next to you. If not, you’ll have to discuss that with the gate agent also. First, you roll to the end of the gateway where the aisle chair and attendant are waiting. You are transferred into the aisle chair. Your assistant informs the baggage supervisor in attendance about how to move the chair. Your assistant also sets the chair up for travel, often having to lay the chair out flat, unhook controls, or remove pieces that may fall off or get damaged during transport. (Think doubling your carry-on) The baggage crew takes your chair while you pray that they were really listening and pass on the information. You are rolled into the plane by no less than 2 attendants, plus your assistant. The three of them coordinate moving you to a seat depending on where your seat is. We recommend an aisle seat; there’s less moving to get to that one. They take away the aisle chair. VERY OFTEN, your flight will be delayed because of maintenance. Do not be fooled; this is often because someone is trying to move your chair and have no idea what they’re doing. Ok, you finally leave and everyone’s boarded and ready to go. Time from curb to boarded: 156 minutes (2hours, 36 minutes).

Now, you guessed it, you’re only on the plane. Most people just debark and you’re done once you land; 5 minutes. Nope, not when travelling with a power wheelchair. You have to wait until every other person has gotten their stuff and gotten off of the plain. The flight crew has to call ahead and warn the destination that you need an aisle chair and an attendant for help. You wait for them. They get there and you reverse the process. If you have a connecting flight, it is my opinion that you should leave at least 4 hours between flights. Yes, you may be sitting for 3 hours if EVERYTHING goes correctly. But, you are much much less likely to miss that connection. Less than an hour for connecting with a wheelchair is just tempting fate. Hell, 2 hours even tempts it a little. Get ready to tempt fate over and over again if you’re travelling with a wheelchair.

This last week, we dealt with all of these and more issues with our travel. Next, I’ll tell you all about these great adventures in purgatory.