Valuable Lessons

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Sorry for the long delay in posting. We have been dealing with some issues with Steve's long term disability insurance which resulted in our need to move, request assistance from family, a state representative and the state department of insurance, and basically have a daily panic attack for almost a month. During that period I did not feel like I should be discussing the issues in a public forum. Especially since my thoughts were entirely negative.

Things have been resolved and Steve has finally been approved for long term disability. Through the process we have learned some valuable lessons.

Our families love us

Yes, we knew we were loved before this but their love was tangible during the last month. Without their financial assistance we would have never made it. But, what was even more amazing, was the sheer number of people who were willing to help us move with less than a week's notice, through a freak snow storm. I am afraid I will never be able to repay their kindness. The great thing about families is they don't expect to be repaid. But, I have made a personal vow to drop everything to help family, regardless of how short the notice.

Public agencies do help if you get to the right person

Steve spent hours on the phone trying to get us help when we needed it. He quickly found that the first person he spoke to did not always have the authority to get things done. He had to speak to supervisors of supervisors until he found a person who could help. In one instance he had to call in a third party. Thankfully, all of the work he put in paid off in the end. I believe they make it hard on purpose in order to determine if you have a legitimate need.

Patience is truly a virtue

One of the hardest lessons I had to learn, was simply to be patient. I always want things to happen yesterday. When it comes to insurance companies and state agencies, that's not how they work. Ever. I spent a considerable amount of time on my knees asking God to give me the patience to wait for the answers.

It is hard to see the light at the end of the tunnel when the flood gates open and you believe you are drowning. I learned in the last month that God does hear your prayers. He just moves at his own pace, not mine. It was not an easy lesson to learn, believe me.

Now that things have calmed down, I can get back to the things that are truly important, like getting our house organized and getting ready for the holidays.

What lessons have you learned recently?

We Moved our Household

Sorry for the disappearance there. Due to some major payment problems with Steve's disability insurance, we have had to move into a smaller, cheaper house.

I had exactly one week in which to pack and move. There was no time to breathe, sleep or blog.

I have a lot to say. It will have to wait until tomorrow, though. Tonight I need sleep and to simply calm down.

Loss of Pride

Steve has been talking about how much of a hit his pride has taken lately. Asking for help is one of the hardest things for him to do. He would rather suffer than ask someone other than me to help him.

I don't really understand this. In my way of thinking, he didn't ask to be disabled. He just is. If he needs extra help, he should ask. I'm beginning to think that its a gender difference.

Steve is the old fashioned sort. The kind of man that thinks the man should be the primary wage earner and prides himself on being able to fix just about anything. The fact that he can no longer work weighs on him like a ton of bricks.

I know that most disabled individuals deal with loss of pride. It is incredibly difficult to ask someone to help with basic personal care tasks. If your self worth is based on being able to do something you can no longer do -- change the car's oil, fix a computer, go to work every day -- the loss can be devastating.

I have learned over the last few years to be discrete, even sneaky, about how I help him. I also do a lot of his asking for him. For example, I ask his brother to "help" change the oil in the car. I also ask Steve to show me how to fix something then say I better do it so I can learn better.

I also give him gentle reminders that he has a lot to be proud of, even if he can no longer perform some functions. He's a great Dad and I remind him that if he was still working he would not get to spend as much time with his kids.

I know I'm not fooling him. That's not the point. I just want him to remember that his self worth is not based on his job or the ability to put on his shoes. No one's is.

It will take some time for him to get over how he feels. He was just learning to manage his bipolar disorder before this all happened. As he put it "he finally felt like he could look in the mirror and like what he saw." Now, he is having problems with that mirror again.

It's hard to stand by and let him figure it out. I want to shake him and say "it's all in your head!" But, I have to let him process it on his own. He will figure it out. I think it is part of the grieving process. He's grieving for his old life.

The Explanation

Steve and I have an extremely unconventional family. Between the two of us we have five kids between the ages of 23 years and 18 months. This past weekend, our eldest -- the 23 year old -- and his family came to visit. He is active military and this is the first time in two years that he's been able to visit. His Dad has had two surgeries since his last visit. There was a lot of catching up to do. Including filling him in on his Dad's prognosis.

One thing I have become good at over the last three years is explaining Steve's situation. Steve doesn't like to talk about it and really hates to sound like he's complaining or whining. So, I have taken on the roll of "explainer".

It was hard for my stepson to see his Dad in obvious pain. Like everyone else, he wanted to help, but didn't know how to offer without offending his Dad. (Not that he would have, but until you've been around Steve for awhile, you don't know that.) He was also understandably worried.

He had gotten some wrong information along the way. Stuff like that happens. We didn't want to worry him, so we really didn't mention it when we talked to him on the phone. Other people like to spread gossip, such as his Dad lost his license rather than he simply no longer drives due to his pain levels. Same outcome, different subcontext.

I'm glad I had the chance to talk to him. Part of me wishes I would have explained things sooner, but I still stand by my decision. Explaining the situation while our stepson was in a combat zone just didn't seem appropriate. There was nothing life threatening and it could wait.

I'm also glad I got the conversation over with during their first night here. It saved a lot of awkward moments. Father and son had an excellent time and there was no white elephant in the room. We all had a wonderful time and the weekend was a smashing success.

Now we just have to figure out how we can return the visit. I'm not sure they make a large enough pain killer for Steve to survive a 1600 mile trip!

Preparing for Guests

My stepson and his family are visiting next weekend. I can't wait. We have not seen them in over a year as he was deployed over seas and his wife and kids were on base, half the country away.

Since we have not seen them in such a long time, we are in "heavy cleaning" mode around here. Is that weird? We clean whenever anybody visits, but for this visit we are purchasing new sheets, area rugs and even a new tv. These are all things we needed anyway, but we made a priority to get them for this visit.

I try not to put too much thought into it, I'm just happy the cleaning is getting done. But, I think we are doing it because we want everything to look as nice as possible and we want the visit to go smoothly. Steve knows me and knows that I will fret over things like a stained rug and old sheets.

I've always been a "the house has to be clean" type of person. In therapy the other day, I questioned whether I am borderline OCD. My therapist says its not OCD unless it interferes with my life. Since, normally, I prefer a clean, organized house, but am willing to let things slide for the sake of time with my family or work deadlines, I think I'm ok.

However, when it comes to visitors I become a mess. I stress for weeks over things like cobwebs in the corners, shampooed rugs and perfectly organized closets. Don't even get me started on the garage!

I get this way when we go away, too. I hate to come home to a messy house and I have a real fear of something happening while on vacation that would cause someone to have to enter our home. What is weird is the only people that would come in during an emergency would not really care if there are toys on the floor or laundry on the bed. They would be more worried about dealing with the emergency.

Anyway, with that being said, please excuse any erratic posting next week. I will be focusing on cleaning behind the refrigerator and stove. I'm just going to accept that this is my week to do my "fall cleaning" and leave it at that.

Do you do an all out cleaning when guests are expected? Should I put mints on the pillow?

Write Down Your Family's Goals

 

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When a member of your family becomes disabled, life all of a sudden becomes all about them for awhile. Plans and goals are placed on hold while everyone learns to adapt to the new situation. It is so easy to just walk away from your goals and lament the fact that you never get anywhere in life.

I have become a firm believer in writing down my goals, both personal and for my family. This is different from my daily to do list. It is a list of the things I am working toward. My daily to do list is an extension of my goal list.

Steve and I have regular discussions about our goals. These are not formal "sit down" discussions. They are more discussions that happen in the car or while we are hanging out on our deck. They include replenishing our savings, buying a home, replacing our car and becoming better organized. Whenever we add to our goals as a family, I add it to my family goal list.

When I am creating my to do list and Steve's "honey do" list, I try to ask "How is this working toward our goals?"

I also try to have a single goal as the "main" goal. For example, we have decided that becoming more organized will help us reach our other goals. So, my to do lists focus on becoming more organized.

Having a written list of goals keeps us accountable as a family. I use Remember the Milk as for my list making app and my goal list is shared with Steve. That way we both have a visual clue as to where we are going as a family. We revisit our goals regularly (usually while driving or chatting on the deck) and make modifications as needed.

Do you have goals as a family? Do you have them written down?

Fear of Success

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The other side of the fear of failure is the fear of success. I battle this fear, too. I often find myself taking jobs that do not pay me what I'm worth and then I stagnate in these jobs.

I am often to afraid to go after the jobs that I know I can do and that would pay me well. My thought process goes something like this:

"Just call them up. What's the worst that can happen?"
"Well, what if I'm not good enough?"
"You know you're good enough, stop it."
"Well, what if the job takes too much time?"
"So, what? You work for a living, it's supposed to take time."
"Well, I just don't think I'm ready. I'll take this other job that pays a lot less, for now."

This whole conversation is held within my own head. And I walk away.  I tell myself I will give myself another month, six months, year to get ready. But that time comes and goes and I'm still taking jobs beneath my abilities. And I get frustrated with my lack of advancement.

I'm not afraid of being rejected. Writers get rejected all of the time. I am afraid of what success means. Would it take more time from my family? Can I manage the additional stress? Am I worth it?

The funny thing is, I know that none of my fears are founded. Just because a project pays more money doesn't mean it will take more time. It will just expand my horizons. The lower paying projects usually end up taking more time than the higher paying projects simply because I have to do more lower paying projects to make the same amount of money.

This week I have made a goal to apply for at least one higher paying project. If I don't get it, oh well. I'm no worse off. But, being afraid to even try will hurt me more than being rejected.

Are you afraid of success? How do you overcome it?

Fear of Failure

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I'm not sure if I should call it "Fear of Failure" or "Fear of Success." Either way, I tend to experience overwhelming fear and anxiety when I branch out from my norm. I want a safety net below me and a full set of safety pads on.

Lately, I have been very frustrated with the direction (or lack thereof) my life is going in. I'm too old to wait around anymore. If I'm going to live the life I want, I have to make some changes. The changes that revolve around Steve are not going to cut it. I have to change the way I look at my life.

I realized that, especially in my career, fear is ruling me. I make bad choices because I don't have confidence in myself. I tend to wait for someone to tell me what to do. Even though I am well aware, that when you are your own boss, the only person telling you what to do is you.

The past week really drove that point home. I had a client that was a huge drain on my resources and was actually costing me money. But, because I somehow (in my own head) made it my fault that the relationship was doomed from the start, I continued to do the work and lose money. I just simply didn't want to fail.

The whole mess kept me from enjoying my family, working with my other clients and was taking a toll on my health. When I finally ended the relationship, the relief was incredible. The fact of the matter is, there was nothing wrong with me or the client. We were simply not a good fit. I know that happens, and it is ok.

It is perfectly ok to walk away from situations that cause you stress whether it is a business relationship or personal relationship. It is not a failure, it is a way to grow. Hanging on to a bad situation takes time away from the good relationships and opportunities.

My fear of failing was truly holding me back. In my head, ending a business relationship was somehow failing. It was only after I reminded myself that every time I started a new job, I had to end the old one, and that the reason people leave jobs is often because the fit is just wrong, that I could do what needed to be done.

Another, problem I have is accepting my true worth. That would be the "fear of success" factor which I will discuss tomorrow.

Do you have a fear of failure? How do you overcome it?

Simplifying Life with Easy Dinners

I love to cook, but there are days when my projects are running long and cooking a meal is the last thing I want to do. When we switched roles, Steve took on the task of cooking dinner but, more often that not, it was either a simple, not so healthy meal (think meal in a bag), or I ended up doing it anyway.

After months of this, I started looking for other options. I read somewhere of a busy mom who cooks her dinners early in the day and then warms it up at dinner time. I ran that by Steve, and he thought that would work.

We tried it this week and it worked wonderfully. I prep the meal the night before and place it in the refrigerator with instructions on how to assemble the meal. If its really easy and quick, he finishes it up right before we sit down to eat. Otherwise he cooks the meal earlier in the day and does a quick microwave right before we eat.

One of the foods this really worked well on was the chicken potpie pictured above. Since I used leftover chicken and potatoes, all that I needed to do was cut up some of the veggies and pop everything in a freezer bag. Using a store bought pie crust, he assembled everything and cooked it in the early afternoon. When it was time to eat, we popped it in the oven for about 15 minutes to warm it up and placed it on the table. It turned out so incredibly yummy!

This weekend I am going to try some freezer meals to see if it saves even more time. I will let you know how it goes. I'm looking forward to an even easier dinner schedule next week.

I can do anything...

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I am a firm believer in "signs from the Universe" (Or God, depending on your beliefs). If I am hit over the head with something repeatedly I take notice. Now, I say repeatedly because sometimes the Universe has to make it painfully obvious that I am getting a sign. Considering I have seen the quote above about 100 times, in rather obscure places, over the last few days, I am taking it as a sign and making it my new mantra. I even printed it out and put it above my desk.

I have always been a believer of doing "everything". I have tried every craft and almost all of the jobs that I have been interested in. I have degrees in both Psychology and Computer Science. My minors included Philosophy, World Religions and Technical Writing. I just want to do it ALL! Unfortunately, that makes me a "jack of all trades, master of none."

As I get older, I have realized that I have to settle down if I want to actually do something with my life. Steve's surgeries has made that even more clear. On a typical day presurgery, I would have about 20 things on my to do list. Each one of them set to priority 1. After Steve's surgeries I became pretty upset that I couldn't get to even half of my list.

Even as of last week, I had more on my to do list than there was time to do it. After being hit on the head by the Universe, I decided to sit down and decide what is important. I chose three areas of my life that I want to excel in -- my writing, organizing my household and my health -- then I made 10 goals for the week.

Now, as I drink my coffee in the morning, I review my weekly goals and look at my to do list. If the list item fits with my goals, I set it to priority 1. Otherwise, it gets a 2 or a 3. Then I get to work on my priority 1 tasks. If I get them done, I go on to priority 2 tasks, and so on. Eventually, I am going to have to decide if the priority 3 tasks should even be on the list, but I'm not ready for that yet.

So, do you have a mantra or motto? If so, what is it?

Shortcuts to Make Life Easier

As Steve and I begin to feel our way through this new life, we have come to realize there are some changes that are necessary for us. I have already discussed our role changes, but we need more than that.

We have always kind of lived by the seat of our pants. We went to work, ate dinner and then did what we felt like. There was really no structure or rhythm to our days. We both had our personal schedules but, more often than not, they did not sync with the other person's. So, whoever was more adamant about his or her schedule won.

With Steve not driving and not being able to do a lot of the "heavy lifting" around the house, a more structured day is necessary. At first, we attempted to just switch schedules. I gave Steve my chore schedule and told him when laundry needed to be done. For my part, I tried to fit my work day in his 9-5 schedule. That bombed almost immediately, and we went back to relatively unstructured days. Everything suffered.

Yesterday, Steve planned a two hour trip without really consulting me. Oh, he told me about it, but it was more a "I may plan this trip" kind of conversation and it was never brought up again. Imagine my surprise when, on the way home from church, he said. "So, if we leave at 3, we should be home at a reasonable time." My day was completely shot.

One good thing came out of the trip -- we had two hours of uninterrupted (well, as uninterrupted as you can get with two kids in the car) time to talk. And, we were both in the mood to talk, not argue. As we talked, I brought up some of the time management skills I have learned by reading sites like Life As Mom and Money Saving Mom.

I mentioned the idea of running our household like a business. This is something I try to do anyway, with my budget and household "notebook", but I've never included Steve in the "business". He laughed initially, but then he thought about it and we decided to try it out.

We decided that we would sit down on Sunday nights or Monday mornings, at the latest and have a meeting. We would discuss what appointments we had personal goals for the coming week. That way we could determine how to get the time to fit everything in. We also quickly decided that there would be no more "unplanned" adventures. Little things could get added here or there through the week, but large trips, purchases and time sucks would have to wait until the following week.

We also decided to implement a morning and night routine. We already had one in place, somewhat, when it came to getting the kids ready for school in the morning and bed at night, but it was still slightly chaotic.  In the evening, all of the dishes are done, the kids get baths and all morning necessities including clothing, lunches and any money needed are assembled. In the mornings, Steve and I wake up in time to have a cup of coffee without the kids and then the kids are dressed and taken to school.

We put most of it into practice today, and things went well. I got a little upset because I couldn't find some stuff this morning, but that's another aspect of "Operation Household". Tonight, the house is neat, everyone is calm and things are ready for the morning. Steve is even sound asleep. Something that doesn't usually happen to the wee hours of the morning.

I'll let you know how we hold up. How do you manage your time? Any special tips?

Negative Thinking

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Anyone with chronic pain knows negative thinking creeps in, especially during moments of intense pain. How is this a life? Am I ever going to get better? What has my life amounted to? These are common questions I hear from Steve and other chronic pain sufferers.

If left unchecked, the negative thinking can creep from the pain sufferer to everyone around him. It is an insidious process. You may not even realize that it is happening until you wake up one day and you realize every sentence in the conversation you just had with your loved one was tinged with negativity.

It is such a tough habit to break, too. It is harder to find the positive in a life of chronic pain than it is to find the negative. But, remember that the negative thinking does not just affect you and your loved one. If you have kids, they hear it, too.

One simple negative statement can do a lot of damage. Here's a little example. Due to the nature of my job, I spend an incredible amount of time sitting in front of a computer. Because I am working on increasing my client base, I am spending even more time staring at a screen. I know that, eventually, I will get back to my normal work schedule. However, Steve has begun to look at this in a negative light.

The other day when we were discussing my work schedule for the week, he made the comment "I hate the fact that you work so hard and have so little to show for it." He went on to complain about my work schedule and started to use my lack of time for him and the kids as a way to drive home his point. Before this conversation, I knew that the extra time I was spending was a sacrifice now, but would pay off in the long run.

After that conversation, I started questioning every minute that I spent working. It became a large source of anxiety. I found myself wondering if I even knew what I was doing and where I was going. One simple conversation could have derailed my entire career. It took almost a week for me to remember that I never questioned when he worked on a project at home because he wanted to excel at something. The black little thought wormed its way into my head and almost destroyed my confidence.

If you find yourself in the same situation, please get help for both you and your loved one. Counseling has helped Steve see how being negative is hurting him and us. You definitely do not want to spend 20 or 30 years with a born again pessimist. Life isn't worth it!

Strength

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I finally joined Pinterest after seeing everyone else's boards during my InterWeb travels. One of the first pins I came across is the print above.

As I mentioned yesterday, I am not feeling very strong right now. This print reminds me that even when I am feeling my absolute worst, I am still strong.

I have handled a newborn baby and toddler by myself while Steve was in the hospital. I drove 8 hours one way two weeks after giving birth to make sure Steve got the care he needed. I may not feel great right now, but I am still getting things done. When push comes to shove, I can stand on my own and fight.

I may not be feeling 100% now, but I will survive and I will be strong. It is the only choice I have.

What keeps you strong when you are feeling like the world kicked you in the teeth?

When is it My Time?

It has been three plus years where the focus of our daily lives, at least in regard to health issues, has been centered on Steve. Learning what he can and cannot do. Learning what the medicines do to him. Learning how the rest of our lives fit in and around his needs.

I would love to tell you that I calmly and compassionately accept that my life has been changed so dramatically. I would love to tell you that I happily place everyone else's needs before my own. But, that would be a lie.

For months at a time I go through my days finding joy in my children, taking care of everything, helping Steve when he needs it, ferrying people from one place to another. Then, the downhill slide starts. Everything starts to overwhelm me. I become angry at the fact that I haven't had a day "off" in months. I no longer find joy in the simple things. I start to wonder where has my life gone, and how do I get back on track?

I start finding myself praying for any kind of a break. Any kind of happiness. But, I know, deep down, that happiness won't show up When I'm this low. You have to be able to see past the darkness to see the happy side of things. All I can see is the darkness.

Usually, it only takes a few days of "pampering Mom" in order for it to lift. Sometimes, all it takes is a change of scenery or a really good cry. But, sometimes, it takes a few days to lift and I start to wonder if I will ever see the light again. I start to wonder about my worth and I start to question whether I can be replaced by a maid.

This weekend was one of the worst periods of darkness for me. I had just gotten over an bout of the flu, the house was a mess and I had not worked as much as I like. I was still exhausted and not feeling up to par. As luck would have it, it coincided with one of Steve's low periods. He was feeling bad mentally and not his normal supportive self.

I spent a lot of time in tears this weekend. With terrible dreams and thoughts. Luckily, Steve snapped out of his depression quickly and could help get me out of mine. I'm not at all worried about my mental health. I see a counselor and a doctor on a regular basis and both agree that this is typical of people in my situation.

It is hard to look at your life and see such a drastic change. It is hard to change your hopes and dreams to match the new reality. It's also incredibly hard to deal with these changes while raising two very active little boys. Any Mom worth her salt can tell you that being "on" for your kids all of the time is exhausting. I simply hit the proverbial wall.

After a couple days of "Mom pampering," things have started to look up again. I'm not one for "getting a manicure" or "window shopping". Those things exhaust me and, to be perfectly honest, end up pissing me off. I'm more a "lay in bed and read a good book" type of person. So that's what I did.

I'm not going to lie and say that all is sunshine and roses again. These episodes are useful in that they make me think about what is important to me. Not for the kids, not for Steve, but for me. They help me make the little changes that will keep my family on track. They also help me discover what is really going on in my head. The honesty of what comes out in an all out crying jag is both disconcerting and enlightening.

No, it's not sunshine and roses, but there is a little bit of blue in the sky and the rain clouds are lifting. That's all I can ask for.

One Thing at a Time

I have always considered myself the queen of multitasking. I can't simply watch a movie, I have to knit, work on a scrapbook, or work while watching a movie. I am constantly doing 30 different things at one time. Lately, I have realized how completely non-productive that is.

I started to notice it while I was reading a book about organization (I can't remember which one now, but they all seem to say the same thing about multitasking). The theme reoccured while I was readingNo Excuses!: The Power of Self-Discipline by Brian Tracey.

The last couple of weeks I have been trying to monitor my work habits. I noticed that when I have multiple browsers, tabs and documents open, I am very slow. When I simply focus on a single task, I complete more work in a shorter amount of time. It seems so obvious, but I have always thought that by moving between tasks quickly, I was more productive and faster.

My illness of the last few days has really drove the "multitasking doesn't work" message home. When you can't think to begin with, trying to think about 10 things at once almost kills you. So, today when I woke up, I decided to tackle one item at a time.

While I was drinking my coffee, I decided what was the most important tasks for today. Then I looked at my schedule for today. I already knew that the kids were going to daycare late and that Steve has a therapy appointment this afternoon. So, I planned my day around him.

Surprisingly, I already have most of my household chores checked off for today. I even switched the kids seasonal clothes around. That was something that was on my to do list for this weekend. Now, I can focus on working during my work time.

Another thing I started today is writing down ideas and tasks that pop into my head at random times. I read somewhere (again, I don't remember where) that instead of acting on an item, you should write it down as soon as it pops into your head. When you write things down, you spend less time thinking about it and it takes up less "head room".

I'm hoping this new plan keeps me organized and more productive. How do you handle your tasks during a given day? Are you a "one thing at a time " person or a multitasker?

Taking Care of YOUR Health

I have been thinking about this post for quite some time. My needs are the first thing to go when things get tough or I get busy. I cut myself short on sleep, my eating habits become absolutely deplorable, I stop journalling, knitting, and reading anything for fun. I will also go without my medication and vitamins, if we need the money for something else. I think many moms do the same thing. Our spouses and children come first always and we always think "There will be time for me later."

I have had recent conversations with my aunt and my therapist recently where I defended this view and both of them looked at me like I was an alien from the far reaches of outer space. I did concede to my Aunt that I believe God intercedes when I work too much by giving me a blinding migraine, but that even those only slow me down. Yes, I am the crazy lady with the lights dimmed, noise canceling headphones on, trying to squint through a migraine in order to read my email or Twitter feed.

Lately, with all of the fun of applying for Social Security Disability (Steve), starting school (the kids) and expanding my client base (me), my health and well being has seriously been neglected. I've been experiencing more headaches, my skin is terrible and I am almost constantly dehydrated. This hasn't been enough to slow me down, though.

So, I should not have been surprised when I got a full blown, all out flu on Sunday. Monday and Tuesday were spent mostly in bed. Today is the first day that I can actually think about sitting at my computer for more than five minutes. Actually, sitting with my laptop on the couch is all I feel up to today. If it wasn't for Steve and my mother in law, the kids would not eat and none of us would have clean underwear.

Did I learn my lesson? Kind of. As of now, I have vowed to get a doctor's appointment, eat better and spend some time exercising. Will it happen? I don't know. I hope so. I do see the need to take care of myself. A little bit of prevention each day -- taking my vitamins, eating better, exercising -- could have saved me from at least four days of down time. But, I still have the mentality that others come first. We shall see.

How do you take care of yourself?

Tropical Storm Lee Aftermath

I am going off topic today. Yesterday and Wednesday our area of Pennsylvania was hit hard by Tropical Storm Lee.  Here are some of the pictures of the devastation:

We were extremely fortunate that our house was not affected at all other than a small bit of sediment in our tap water. Couple of gallons of spring water and we were completely fixed up. My friends and neighbors are not as lucky. The clean up will take some time.

Fortunately, we live in a rural area. Everyone who could get out to help, did. Our volunteer firefighters worked tirelessly to pump the water out of basements, rescue stranded people and block off roads. That's what we do. We help where we can. As more and more people begin moving about, neighbors will help neighbors and friends and families will work together to clean up the mess.

That is probably the best part of living in a small town. I grew up in a small town, moved out to live in two major cities, and moved back. I know, without a doubt, that, if there was a problem, my friends and neighbors would be here in a heartbeat. Helping out. In the cities I've lived in, I didn't even know my neighbors.

This storm reminded me to be thankful for my neighbors, my firefighter friends, and my family. I am so glad we made the decision to move "back home."

Cold Weather is Coming

For most of my life I have thought of fall and winter as a large inconvenience. I have a mild case of  Raynaud's phenomenon , so when the cold weather hits, I have a hard time keeping my feet and hands warm. Typing becomes problematic and I can often be found wearing fingerless gloves indoors. It's annoying, but not terrible.

For Steve, the colder weather is torture. He started wrapping up in a blanket in the evenings a month ago when the evening temperatures dropped below 70 degrees. With the onslaught of Tropical Storm Lee, he has started wrapping in 4 or 5 blankets.

He wasn't always averse to cold temperatures. Until a few years ago, he would hunt in sub-freezing weather. He was always my heater when things got too cold for me. Since his activity has slowed so dramatically, the cold is unbearable.

Cold weather causes extreme pain for him. His muscles tense due to the shivering which exacerbates the pain. Short of keeping the house at a tropical 90 degrees, there is not much we can do for him. One of the reasons we chose this house when we moved was because it included a wood burning stove as the main source of heat. Steve can sit near the wood stove and warm up and the rest of us can hang out further away. But even he won't start a fire when its 60 degrees outside (thank God!).

Things get a bit interesting around here when Steve starts assuming the kids are as cold as he is. I have to remind him that the kids are typically running around and not sitting still all day. They don't need a long sleeve shirt and sweater unless they are going to be outside for any length of time. Otherwise, they are sweating and uncomfortable.

How's the weather where you are? Are you keeping warm and dry?

Waking Up from Limbo

s. e. smith, the author of this ain't livin' wrote this lovely post about not treating disabled individual's as if they are in limbo. Limbo is a good way to explain the state the we have been in for the past year. We knew that Steve's pain would never get any better and that the "fixing" was complete, but we were at a loss as to how to proceed. So we stagnated.

Of course, we first tried to go back to "normal" life. But after a few weeks of Steve crying in his sleep because of the pain from sitting in a chair, in front of a computer monitor, all day and me watching his depression deepen and his anger increase, we knew that wouldn't work.

So, he went on short term disability (again), we moved closer to a more sympathetic doctor, then we entered limbo. Every day was exactly the same as the last. The pain lessened, but will never go completely away, his depression sort of "evened out" but he was still depressed. Day after day of lying on the couch loomed in front of him and he had absolutely no plan or even desire to change it.

I became depressed. I started questioning my life. Would ever have the man I fell in love with back? What would become of us? Was I doomed to be a single mother with the children's father lying right there? Could I handle that? Did I want that? What kind of life was this?

After a few months, his doctor and I convinced him to go to counseling. His first counselor tried to help him accept his limitations, but her viewpoint seemed to be that I should just "suck it up". This was his life now and, if he just accepted that fact, his depression would lift. It was ok to lie around all day doing little or nothing.

Unfortunately (or fortunately, depending on your viewpoint), Steve is not a "do nothing" sort of guy. He's always had projects going. Sitting around watching movies doesn't work. Yeah, he liked that life for a little while (who wouldn't) but his depression still didn't lifted.

His new counselor is more proactive. She works with both of us to help us figure out our new life. Steve is still coming to accept his limitations, but he's back to working on his projects and helping out with the kids. Our roles have changed, but at least we are living.

It's going to be a long, hard road ahead. There is still a part of each of us that refuses to accept the change. I still want to be a "kept woman," whose only worry is whether the house is clean and the family is fed. Steve still wants to be the primary breadwinner. (I know, so 1950's, right?) But, that's not our life now. Instead of stagnating, we are living. Each doing our part to make our life better. Each day coming closer and closer to understanding and accepting our new life together.

Am I Being Helpful or Hurtful

As I was floating around the Interwebs over the weekend, I came across the Chronic Pain Blog at Everyday Health. As I do whenever I come across something interesting about Chronic Pain, I dropped everything and started reading.

When I read this post, it made me stop and think about how I treat Steve and the "advice" I give him on a daily basis. Am I helping him or am I hurting him? Item seven in the article states:

Your public persona learns to listen politely while someone gives you their opinion about what you should and should not do. The private you knows you’ll do what you damn well like and just smiles knowingly. I’ve found one of the most misunderstood areas is exercise. “Are you sure you should climb that hill? Should you be doing that? Are you up for that?” There is this public idea that believes caring is shown by these inane phrases. We learn what we can do and what we can’t do. We also think privately, “Don’t tell me what I can’t do. Tell me what I can do or don’t tell me anything at all.” Those of us who live within this private club can share advice. We can. It’s different here in this private world and even then, we know each of us is an individual and our privacy and our individual decisions are respected.

I ask him those kind of questions all of the time. I even go as far as to say "You're not going to do that, right?" when I feel strongly about something.

For example, we had family come to camp in our backyard this weekend. The temperatures have been hovering around 50 degrees the last week or so. Now, 50 degrees to me is pleasant sleeping weather. 50 degrees to Steve means thermal underwear, a jacket and a blanket, if he is going to spend any time sitting outside.

The guys were planning on sleeping in the tent that night. Before they got here I told Steve repeatedly, "I don't want you sleeping in that tent tonight." "You're planning on sleeping indoors, right?" etc., etc., I thought I was being helpful and concerned. Now I see that I was just being naggy.

In my own defense, there are some things he does to hide his pain from others that have very long term repercussions. One of them is not telling his friends and family that he can no longer do certain things such as handle colder weather, crawl under a car to change the oil, sit for long periods of time... So, when his family comes to visit, he does all a lot of things he's not supposed to, then he has to lie on the sofa for days.

So, what? Right? Well, when he has to lie on the sofa, I have to make up the work he would normally do. Which puts me behind on my deadlines and makes me tense. The tension results on a tense environment around the house and upsets the kids. Whereas, if he would have admitted his disability, this would have been avoided. He can still visit with his friends and family, just in a different way than before.

So, the question remains am I being helpful or hurtful? Am I being selfish when I try to stop him from doing something that will put him out of commission for days when it is something he loves doing? Should I just keep my mouth shut and deal with the extra work that comes my way? At what point is he being selfish in his pursuit of a short period of happiness? If you have any thoughts on the matter, please let me know!

Keep a Journal

My journal is my best friend these days. I started it a couple of months ago as a method of "self therapy." More than anything, it keeps me together when I feel like things are falling apart.

Since I'm a technophile, my journal is completely digital. I use Red Notebook for its calendar, search options and word cloud. Instead of flipping through pages, looking for something I wrote I don't know when, I can type a few words in the search box and voila..there's what I was trying to find out.

My journal helps me decide what to discuss with Steve, and what to keep to myself. For example, it helps me figure out if a bout of depression is a short term thing or if has been going on for some time. Often, bipolar individuals do not know when they are experiencing a depressive episode until they are deep within it. If it seems like things have been going on for some time, I can look back and see what I've written in my journal.

My journal keeps me on a positive track. I can always tell when I'm starting to become negative about things because my word cloud shows the negative words like "can't," "don't," "overwhelmed" and "sad" in great big letters. I don't edit my journal entries to make them happier, but I'm more aware of my thinking.  Just that little visual reminder tells me that I should start focusing the things I'm grateful for, rather than the things that bring me down.

Finally, like all journals, it is a place where I can vent and scream and cry without anyone knowing about it. Sometimes, just writing about a situation is all I need to make it better. I don't have to be "perfect" or "upbeat" or even understanding. I just write what is inside of me. 

I wake up early every morning specifically to write in my journal. I prefer the mornings because venting my anger and frustration early keeps me from having a bad day. It works the same when I write about what I'm grateful for. It's kind of hard to be cranky when you've just spent a half hour expressing gratitude for the sunrise.

If you don't have a journal, I highly recommend it. It can be as little as a single sentence like the one Gretchen at The Happiness Project keeps.  Everyone needs a place where they can express their feelings with no repercussions.

Let it Go (Why My Kitchen is a Mess Right Now)

I've mentioned that Steve and I had a major change in roles before. This change is one of the hardest things for me to accept. For five years, I have had a method of keeping up with the housework that worked reasonably well. When I got up in the morning, I would neatly stack the dishes that were left on the counter over night (before we had a dishwasher) or put them in the dishwasher. If it was laundry day, I would dump a load of laundry in the washer. This was all done while my coffee was brewing.

I absolutely hate a messy kitchen. Actually, I hate any mess at all, but I've gotten over that as our family has grown. (Three boys are quite messy.) But, the kitchen is the worst. It's the first thing people see as they walk through our door. To me, it sets the tone of the house.

Since we've changed things around, Steve has complained each and every time I cleaned up the kitchen in the morning. This is now his job and he feels that by cleaning up, I am minimizing his worth in the house. I've never thought of it that way, I just wanted a clean kitchen.

This morning, our kitchen is particularly messy. I would take a picture, but I'm way too embarrassed. We spent much of yesterday lounging about and it shows. My first reaction was to start cleaning as soon as the boys were safely off to school. I had to force myself to walk away and accept that it would be done.

No one is coming to our house today. It is just Steve and I all day until we pick up the boys from daycare. If he wants to rest before cleaning up, I have to let him do so. Instead of cleaning, I came into my office/bedroom and shut the door. It is the complete reverse of shutting the door to our oldest boys bedroom because I don't want to see his mess! I'm shutting out the rest of the house.

I have to trust that it will get done when Steve feels up to it. And, I have to remember that my way is not always the only way. I'm considering creating a sign that says just that and placing it on the wall above my computer screen. Maybe that will help make it easier.

Decision Fatigue -- They Put a Name On It

This article from the New York Times finally put a name to what has become of my life. Decision fatigue is the biological effect that occurs when you spend your time making decision after decision. At some point, you finally have had enough and you either start making reckless decisions or not making any decisions at all.

I do both, but I seem to lean more toward making no decisions at all. In essence, I hide. I've been noticing the same behavior in Steve, too. We have spend so many years making big decisions -- should he have the surgery, should we move to be closer to family, should I continue my writing or should I start looking for another job -- that we are burned out.

The problem is, we haven't just stopped making big decisions, we've stopped making any decision at all. I spend a lot of time staring at my list of writing projects without starting any of them. I just can't decide what to write or how to start

When we do make decisions, we find ourselves considering the most reckless options.  For example, my poor laptop is dying a slow agonizing death. I find myself spending a lot of time talking myself out of buying another one when we simply don't have the money for it right now. And, Steve supports this, he just wants to see me happy without placing any thought into it.

This is causing us to remain stagnant in our lives. We have become slugs with no purpose. Why, because we can't decide on a purpose and we don't want to think about it. We would rather stumble around StumbleUpon (me) or lay on the sofa and watch terrible movies (Steve).

I'm not sure how to get out of the rut we are in. But, I now know what is going on and can address it. Maybe by starting very small. Today I'm going to work down my list of articles. Just start at the top and work my way down. No decisions, just work through the list.

Routine

For the past three years, I have been spouting off that "I can't have a routine. It just doesn't work for us." What I really meant is I have to have a strict routine or no routine at all. And since I live with other people, a strict routine just doesn't work.

There are days when all Hell is going to break loose. There are days when it will take Steve forty-five minutes to get dressed and asking him to help get the kids out the door seems like cruel and unusual punishment. There are days when the kids are going to cooperate and be helpful and then there are days when they are not. As a writer, there are days that I can write 10 articles in a few hours and then there are days when I can't complete a single paragraph.

So, because my days didn't fit in a nice little OCD box, I gave up on routine. Allegedly preferring to "wing it." Well, winging it creates endless days with no motivation, no purpose and really awfully behaved children (and adults).

When Steve and I were talking about how to make our lives more purposeful and happy, one of the common themes was "We need some routines and traditions."

The week before last, I had sat down and planned my work days out so I knew what to do when.  During our discussions, Steve and I looked at my work day and scheduled the chores and other things around my day.  I made a list of the chores that needed to be done. It was eye-opening to realize that Steve had no idea when I cleaned the house. We also planned in time to play with the kids and downtime for each of us.

This week was the test run and things seem to be going well. We are still in the process of tweaking everything but everyone seems much happier. The kids have a clear idea of what is going to happen during the day. I get a reasonable amount of time to work and Steve gets time to rest when he needs it most.  I can't believe how much a simple routine makes the day go better.

Focus on the Positives

Last week was one of those weeks where everything just pissed me off. Steve had another medication reaction that made him sleepy and pretty much worthless. The kids were home from daycare because we didn't have the money to send them. Steve was paid his normal short term disability pay, but then a third of it was removed from our account without our knowledge.

Did I mention the kids were home from daycare? Yeah, that meant I couldn't work until after they went to bed.

Needless to say, I was a tired, cranky, unhappy person and quite the joy to be around. Most of the time I was either screaming, crying or just plain not talking.  I'm pretty sure my family preferred the not talking.

My mood set off Steve's already foul mood -- he hates to be worthless and sleep all the time.  The kids were cranky because Mommy and Daddy were fighting. It was horrible around here.

I tell you all of this because it made us realize something. Something we should have realized a long time ago. We can wallow in our misery. Hate God because he won't heal Steve's back. Hate everyone because they have it better than us. Or, we can focus on the good in life.

We may not have a lot of money right now, but we have enough to eat and a roof over our head. Steve may not be able to wrestle with the kids, but he can read to them and play games with them. I have the ability to do the work that I love, even if its at 2 am. Our kids are healthy, happy and interested in life.

No, our life is not going the way we expected it to. But, it's going the way it is supposed to. Steve and I have always said "Things happen exactly when they are supposed to." We just seem to have forgotten that. Now we are focusing on remembering.

We are also focusing on creating routines for our lives. We need them and they allow us to go through our day with purpose. Everyone needs purpose and direction. More on that topic tomorrow. For now, have a wonderful, purposeful day.

The Kids' Reactions

The other day my 11 year old son came up to me and said "Mom, I'm mad at Steve's doctors." I asked him why he felt this way, and his response was "I don't know why they won't just fix his back and be done with it. Why does he have to wait and wait and wait?" It was then that I realized we had never explained to him that Steve was not going to get better and that the doctors had done all they could do.

He was so upset. When Steve and I got together, my son was 6 years old. Steve and he had a lot of fun goofing around in swimming pools, wrestling, and just "being boys." Over the years, the horse play has slowed down to nothing. It never occurred to me that it was missed.

Steve and I talk so much about his pain levels, doctors appointments, surgeries and medications that when we are hanging out with the kids, we try to avoid the subject. I realized that was wrong. That the older one, at least, should have some explanation for what has happened and why it is never going to go back to the way it was.

Our younger two really don't know any different. They have never had a Dad that wrestled with them. They are so used to Daddy lying on the couch, that they are slightly confused when he does play with them or take them to the park.

After that conversation with the 11 year old, I also realized that we have to be more careful about what we talk about in front of the younger two. And how we act around them. We often forget that they understand more than we think they do.

For example, when our four year old wants attention, he starts walking with a limp and complaining that his back hurts. That's also how he attempts to get out of doing chores or anything he doesn't like. He's just simply used to Daddy getting to lie down when his back hurts.

Steve and I had a long discussion about this over the weekend. We are trying to make it a more positive environment around here. (More about that tomorrow). We don't want the kids to grow up with a "sick" Daddy. We want them to just grow up with a "Daddy".  It will be a work in progress, but with some positive thinking and some intentional living, I think we can change it around.

Planning for theFuture

Yesterday I woke up with a horrible case of the flu. Now, the flu is not deadly (at least to a relatively healthy 37 year old woman), nor is it a long term illness. I feel much better today.  But, as I lay in bed under a big, heavy blanket even though it was 80 degrees outside, I thought about how we would handle things if something happened to me.

Three things occurred to me.

1. I can no longer take my health for granted.
2. We need to get start saving again.
3. We need to have a Will and Powers of Attorney written up.

We need me to be as healthy as I can be. If I would have a long term illness or injury, we would be sunk.  I should already know this, as I had a separated pelvis when I was pregnant with my last baby and spent three months in a wheelchair. But, somehow the birth of the baby has caused me to forget how awful it was.  This flu made me remember what it was like when both parents could not climb stairs, pick up children or even make dinner properly. I cannot take my health for granted anymore.

However, even perfectly healthy individuals are in car accidents, have heart attacks or sustain other life altering injuries. Steve was perfectly healthy before he tried to lift an air conditioner the wrong way. So, we should be prepared for the worst. That means having a decent savings account (although what I used to think was decent was sorely lacking) and having a Will and Powers of Attorney in place.

The money is easy to think about. I can come up with a budget and a plan for saving. The Will and Power of Attorney is a more difficult. No one ever likes to think about what would happen if you died tomorrow. But, we also have to decide who would help care for our children if I was unable to do it. As they get older, it will be easier for Steve to manage the day to day activities, but right now he would needs a ton of help. His mother lives with us, so it is not an immediate need, but we should have another person in line.

Have you thought about what would happen if you became unable to function? What plans have you put in place?

The Growing Bill Pile

Today everyone has money issues. The economy has tanked and we are all feeling the pinch. But, three surgeries in three years brings on a pile of bills that is not to be believed. Steve even has amazing insurance!  I have no idea how people who do not have any health insurance deal with the onslaught of medical bills, lost wages and creditors.

One of the major things to be aware of when you are faced with a short-term or long-term disability claim is that you will only receive a portion of your paycheck. And, in our case at least, it is a sliding scale. So, as the medical bills increase, the income decreases. This is horrifying.

You can offset the difference by purchasing private disability insurance, but many people do not do this. I know we didn't. It never occurred to us that Steve would be unable to work by the age of 40. Even after the first two surgeries, we figured he would always be able to work. He has a desk job and can work remotely. Unfortunately, we did not factor in the pain from just sitting at a computer for eight plus hours.

You should also know there is a waiting period for Social Security Disability. Currently, it is five months. Five whole months where you don't get any sort of paycheck. I can't imagine it. I will forever be grateful for Steve's disability insurance through his employer.

We are struggling right now and, I'm sorry, I don't have any words of wisdom. We are incredibly lucky that I can work from home and can make enough money to keep us afloat. I wish that I would have spent more time growing my business before Steve got hurt, but I can't go back and change that. I can only work with what is in front of me.

I will tell you to set your priorities early. For awhile, we have been living day to day, paycheck to paycheck. I don't think either of us really understood the permanency of the situation. Plus, Steve was unable to do some of the work required for me to have the time I needed to work. If we would have set our priorities, we could have staved off some of the panic we are feeling now. Now I am playing a "catch up" game and it is hard on me and my family.

If you have any suggestions on how to deal with the medical bills and scary financial situation, please comment. I have already cut our expenses to the lowest we can go. Now it is a matter of making more money. I have a positive attitude and have spent many hours in prayer. I could use all the advice I can get.

Why I Resist Counseling (and Why I'm Going)

Ever since Steve's third surgery, it was suggested that I go to counseling. I do recommend counseling for anyone in a similar situation. Heck, I recommend counseling for anyone who lives with a bipolar individual. There is a lot going on there that you should really get expert advice on.

Anyway, no matter how often it has been suggested to me, I smile and say "thanks" and then walk away. It's not that I don't think I need it, I'm just pretty sure I'm not going to agree with/like what I hear.

I know, I know, you don't go to counseling to like what you hear. But, I've been through counseling, I usually don't agree with what they say. And, I have yet to find a counselor that truly understands the reality of the situation.

Here's what I don't agree with--

You have to take a break -- Umm, yeah, so, no. I'm a freelance writer with a very active one year old child (and two very active older boys) and a partner who can't drive or do much heavy duty housework. I also have a very large yard that takes at least 3 hours a week to maintain. I am on the move from sun up to sun down. Taking a break puts me exponentially behind.  No, thank you.

Have family come in to help -- Our family has busy lives of their own and already help out whenever they can. Steve's mom lives with us. So, this is one is already working as well as it can.

Hire help -- Are you going to pay them?

You can't do it all -- Well, if I can't, who is going to?

There are a thousand and one more reasons that I avoid it, but those are the big ones.

Recently, I've been given the chance to attend counseling again and I'm going to take. For exactly the last reason that I listed above. I'm failing at doing it all. I'm constantly yelling and snipping at my family. I'm forever tired and I have no goals or priorities.

This time, I sincerely hope that I can get more out of it than past experiences. If someone could just help me find my priorities and set realistic goals, I will be happy. I need the help and I understand that. I am going to try to go into this with an open mind and hopeful heart.

Are you resisting counseling? If you are or have gone, how has it helped you? What have you taken away from it?

Becoming an Expert

I may not be an expert in anything else but I am definitely an expert on S, his meds, and his condition. I have to be. He can't always make the best decisions for himself and he needs someone to advocate for him and keep everything straight. 

I know how his  medications interact better than his doctors or the pharmacists do. i know that one of his meds metabolizes in his liver, which cuts the effectiveness of all his other meds in half. I have often said "no, you can't give him x med because he will get sick/ have a reaction/ get depressed/ become manic." Every doctor has looked at me like I was crazy the first time I said that, but I back my information up with hard data and exact dates and times that it has happened.

I also know what exercise will do to his mood. How much he can take before having to give up. What his mood is on a day to day and moment to moment basis. And I am learning how to encourage him while also making sure he doesn't over do it. (This last one I'm not so good at yet.  I have the theory down, but I'm still learning to put it in practice.)

There are some times when S is in so much pain and/or is so depressed, that he is not sure what meds he is taking. Even the ones he has been on for years. Oh, he knows the names, but ask him the dosage or even when he took the last dose and he'll give you a blank stare or an embarrassed laugh. He has loud alarms set up on his phone and I double check with him every time. I also have the exact dosages written down on my phone. 

He also tends to understate how much pain he is in (especially with friends and family) and I have to sometimes be the "bitch" and tell him to slow down. I have talked to his brother and family about how to help him, because he refuses to do it himself. I have also said "yes, he said his pain is a 3, but he understates things, I truly believe it is more of a 6 or 7".

I believe everyone who has a loved one with a disability should become an expert on that person. Ask a ton of questions. Scour the Internet. Buy a Physician's Desk Reference. Read every book ever written on their illness. Keep a journal. Your loved one will be better off for it. You don't have to be annoying about it. It doesn't have to become your whole life. But, you should be knowledgeable. The doctors, surgeons and pharmacists don't know your loved one as well as you do.  Make them accept you as a part of the treatment team. 

That being said, don't become the "parent". (Unless, of course, you are the parent, then skip this and carry on).  S still knows more about what is going on inside him than I do most days. If he is feeling good (or reasonably good), I don't go to his appointments with him. I may write a note, if I feel strongly about something, but he is perfectly capable of talking for himself. I do question him and ask to see his prescriptions before we leave the parking lot. That way, if I notice something amiss, I can run in and talk to a nurse. But, overall, he's on his own. 

I also don't shove my knowledge down his throat. I will mention certain signs or symptoms, but I don't harp on it. My research and information is for me only. On the other hand, he knows how much research I have done, so if he has a question, he will ask me. But, its only a small part of our conversation. I don't want our life to be all about his disability or pain. We have much bigger fish to fry...such as how do we keep our dare-devil one year old from climbing up on the roof...

The Drug Stigma, continued..

I posted about S's experience with the stigma against people who take narcotics on a regular basis when he went to the emergency room.

Today, we ran into it again at the pharmacy. The pharmacists refused to fill his valid prescription, written by a reputable doctor, on the grounds that he is taking too much. My question is "Since when did pharmacists become doctors or DEA agents?"

This is a common problem when on a long term narcotic prescription. Many of the people interviewed for Arthur Rosenfeld's book The Truth about Chronic Pain: Patients and Professionals on How to Face It, Understand It, Overcome It complain about their pharmacists refusing to fill narcotic prescriptions.

In S's case, he was prescribed a higher dose of his breakthrough medication because we were going on vacation. His doctor tried to estimate how much more he would need, but the estimation was off and S needed to take more than was prescribed. Before he left, his doctor told him, "come back when you run out, I will refill it."

S went back to the doctor when we returned and explained what happened. The doctor had no problem with this and wrote another prescription to make up the difference. He knows that S is in constant pain, and any additional activity is excruciating. He also knows that S does not abuse his prescription. If he is not in pain, he doesn't take them. This was the first time that he ever asked for an additional prescription. It was not a problem.

We knew the insurance company would not pay for the second prescription and that is fine. If you take any medication outside of the prescribed amount, the insurance company will not pay for the additional prescription. We told the pharmacist what had happened, she called the doctor's office to verify and filled the prescription.

Today's script was his regular monthly dose. Because we live in a rural area, the pharmacies do not typically stock this medication. We almost always call around to find out who has it in stock. Our regular pharmacy is part of a chain and the local store did not have enough. We called the next closest store in the same chain and they did have it in stock. However, the pharmacist refused to fill it --without even seeing the prescription or talking to the prescribing doctor. I ended up driving an hour to get the prescription filled at a different chain pharmacy.

Correct me if I'm wrong, but I feel it is not the pharmacists job to determine whether or not an individual needs a medication. I can see refusing to fill it if there was a drug interaction or if S was allergic to it. But, simply because the pharmacist felt he was taking too much, I don't think that's right.

It is the doctor's job to determine the medication needs of his or her patient. S's doctor understood the circumstances, knew it was not going to be an ongoing problem and wrote the script. If he felt there was something underhanded or not quite right, he would have refused to write the script.

Needless to say, the pharmacy in question has lost our business. I am willing to drive an hour for our prescriptions if it solves the problem. S has fought long and hard to get the correct pain management. He is going to live with this pain for the rest of his life. He will become tolerant to the dosage he is on and it will need to be increased. These are the facts of chronic pain and narcotic use. I refuse to work with a pharmacy that does not understand or accept these facts.

Dealing with the Bipolar Rage of a Loved One

I spent most of today composing this post in my head, then mentally erasing it as I decided that I would not post something so personal. I finally decided that if I am going to be completely honest about how bipolar disorder (and S's other disability) affects me, I have to post the hard times as well as the easy or clinical.

S deals with Type I Rapid-Cycling Bipolar Disorder. This means that, unmedicated, his moods shift rapidly from manic to depressed and back multiple times through out a day.

My stepdaughter also suffers with bipolar disorder. We are unsure of the severity of her condition, because she refuses to work with any psychiatrist or psychologist. She was diagnosed when she was placed in therapy through a court order.

One of the most disturbing parts of unmedicated bipolar disorder is the uncontrolled rage. It is for bipolar individuals to become enraged over the most seemingly insignificant things. When they are in a rage, they cannot control their actions. S and others whom I have talked to say that they feel sort of "outside" themselves. They know their actions are wrong and harmful, but they cannot stop until the rage is over.

My stepdaughter, who is 22 weeks pregnant, had one of these rages last night. She threw herself on her stomach on the floor ("exactly like a four year old," she says), punched her boyfriend repeatedly, completely destroyed her phone (arguably her most prized possession) and threatened her boyfriend with a knife. I have been through many of her rages, some of them targeted at me, it is quite frightening.

However, that is not the most disconcerting part of the episodes. What is truly unnerving is the way she can flip from complete rage to laughing and joking like nothing ever happened in the blink of an eye. This switch is why she is never admitted to a psychiatric hospital, no matter how hard we try.

By the time her grandmother got to her last night, the rage was over. My stepdaughter downplayed the entire episode, even though my mother-in-law heard most of it on the phone. She did agree to seek psychiatric help, so we drove her to the hospital, which is an hour away. (In our area all hospitals are at least an hour away.) By the time we made it to the hospital, her story had changed to "she had fallen, and needed the baby to be checked out." We confronted her, and she admitted to the real story, but did not see the need for an inpatient stay.

Because she was so calm and under control, the mental health worker did not see a need to admit her either. She denied any intention of harming anyone and there were no accessible medical records supporting her bipolar disorder. I do understand how he came to his decision.

Unfortunately, a normal person's moods and feelings do not switch that fast. Even though I understand what happened intellectually, emotionally I am still mad as hell and scared for her boyfriend, her unborn child and her.

The rages are increasing in severity, which is also a sign that her bipolar disorder is increasing in severity. I fear what she will do.

I have known one bipolar individual who had a standoff with the police, complete with guns. I know S has done some incredibly stupid things in a fit of rage. Both S and I have gotten hurt trying to subdue our daughter during one of her rages. She has destroyed property, broken down doors and kicked her four year old brother.

Right now, the only thing S and I can do is to refuse to allow her into our home and around our younger children.

This is one of the hardest decisions we have ever made.

It is hard to tell one of your children that she can no longer have contact with you. I truly hope you never have to experience this. But, we have to protect our own sanity, and we have the safety and innocence of our younger children to think about. In this instance we truly have to sacrifice one to save many. Knowing this does not keep me from crying for and worrying about her and her unborn child.

Please understand, before you judge me, this is not a unique instance. This has been going on for the five years that I have been in her life and even longer. Her mother,father and brother have been dealing with this all of her life. At some point, you have to say "STOP!" She is 18 years old, living on her own and responsible for her own life. Everyone needs a break from it. And, if she is not going to get help, she must deal with the consequences on her own. We cannot force her to do anything. Nor, can we stop this. We must now think of our other children and ourselves.

Handling the Disability Insurance Company

I wholeheartedly agree with the Disability Insurance Business Blog's recent post "Why Should You Get Disability Insurance?" Without S's employer sponsored disability insurance, we would be sunk. I was not prepared to become the household's primary breadwinner at the time that we would have lost his wages. It also ensures that his employer continues to hold a job for him, if and when he can return to work.

However, just having disability insurance is not enough. When you become disabled, or if you are simply going in to the hospital for a surgery or other illness, you must become a disability insurance expert. You should know how much of your wages the insurance will cover, for how long and for what conditions. It is slightly disconcerting to get your paycheck and find that you are only getting half of what you would normally make. Ask me how I know.

Once you start a claim, you cannot assume that you will be paid automatically. Insurance companies handle a large number of cases on a daily basis. You are just one of thousands. You must keep in contact with the company to make sure that your claim is being processed in a timely manner, they have all of the paperwork they need and they are in contact with the right doctors.

You probably have a case worker at the Insurance company. Someone who is assigned as a liaison between you and the company. As soon as you can, find out who this person is and make sure that they have your current contact information. If you will not be able to speak for yourself, make sure they know who can. Then, make regular contact with case worker to make sure that your claim is being processed in a timely manner. You may even have to do some of the "leg work"--getting paperwork from the doctor and faxing it, making phone calls, etc.

Dealing with the disability insurance company has become a major part of S's life. He has multiple doctors and multiple diagnosis. All of these doctors have different recommendations. S spends a significant amount of time working with his doctors to make sure the paperwork reflects what is actually going. Even then, he has to fight to get his claim approved and it is often only approved for a few days at a time. He has made the comment to both his doctor and the insurance company that "I spend more time working on paperwork than I do actually working on my rehabilitation." I know that he has spent entire therapy sessions working on the paperwork with no time left over for therapy.

Not all claims will be this hard, but you must know your rights and who your case worker is. Without this information, your claim can (and often does) get lost in the system. This means you don't get paid when you expect to, which is frustrating and often harmful to your recovery.

Role Change and Acceptance

Five years ago, S and I had a conversation which defined our roles in our relationship. I was pregnant with our first child together (we each had children from previous relationships) and we were deciding whether or not I would return to work.

At that time, we decided that one of us would remain home with our child for as long as we could afford it. I had a very difficult pregnancy and severe postpartum depression, so I was the one who stayed home. Over the years, our roles solidified. I handled the housework, shopping and primary care of our children. He handled the "making money" portion of our relationship. It was a perfectly acceptable and comfortable arrangement for both of us. We were actually a little proud of our "conventional" roles.

When money got tight due to S being on short term disability after each of his surgeries, I began finding writing jobs which I could do at home. It was enough to bring in the extra cash we needed to make ends meet, but it still allowed me to retain my role as "Mom."

In the last month or so, we have had to re-look at how we handle things. Right now, the chances of S returning to work full-time are slim. I have had to restructure how I work in order to become the primary "breadwinner". This has been a huge blow to S's ego. He prided himself on providing for his family and the concept of not working is so very foreign to him.

It has also changed how I perceive myself and my work. Before, writing was more of a hobby. Something I did in my free time to bring in a little extra cash. I really didn't worry about getting new clients or establishing professional relationships. I was happy with what I had. Now I have to extend myself professionally, and it is taking some time to get used to.

Other role changes have taken place, also. S can no longer do major yard work, such as mow the lawn, shovel snow or weed gardens. I have had to take over those tasks. This is one area where acceptance has come easily for me. Mostly because every week I have at least two hours to myself as I tool around on the riding mower.

In exchange for my additional work hours and the fact that I am responsible for the outdoor tasks, S has taken over the day to day care of the children, the cooking and much of the light cleaning. This is another area where I struggle. The house and kids have been my "domain" for so long that giving up control is hard. I have learned to clamp my teeth hard on my tongue when the dishes sit overnight or the kids get more video game time than I would allow. It is not hurting anything, but my "Mom OCD" starts rearing its ugly head. It also bothers me that he gets more time with the kids than I do. But, I still work from home, so I get more time with my kids than most parents.

Once S and I both grudgingly accepted the change, the transition became much smoother. We are not totally happy with the way things are. It's going to take more than a month to break years of habit and expectation. But, we remember to laugh a lot and we talk to each other. We have always been each other's best friends and we have always communicated well. We make a concerted effort to make this transition as easy as it can be. We may not like it, but we can accept it and, right now, that's good enough.

Driving

One of the hardest things for me to get used to in this new life of ours is the fact that I am now the only driver in our family. I went from driving only when I absolutely had to (and it had to be a darn good reason) to doing all of the driving all of the time.

I am not afraid of driving, I just don't like to do it. I prefer to be in the passenger seat where I can knit, daydream, or simply talk. I prefer to be the one who hands the kids drinks, flips CDs, and squashes the backseat squabbles. I don't like to deal with traffic, watch for exits and do all the other "work" involved with driving.

S is now not allowed to drive at all. His pain increases drastically when he is simply a passenger. Driving is excruciating. He also takes medication that makes him drowsy and sometimes disoriented. It is simply not safe for him to drive.

I never realized how much time is involved in being the only driver. We live out in the middle of nowhere. The closest non-convenience store is over 20 minutes away. We have an hour trip twice a day to get our kids to and from daycare. Even when I combine trips, which I do every chance I get, at least 2 1/2 to 3 hours of my day is spent in the car.

It is a huge pain in the butt to not be able to say to S, "I'm in the middle of a project, can you run to the store for milk?"

He feels it, too. He used to enjoy driving. He was a truck driver for many years before he started working a desk. When he needed to get away for a bit -- to calm down or just think -- he would hop in the car for a bit of a drive. His daughter and he have their best conversations in the car. He can no longer do that.

It was really hard for me getting us to and from our vacation. It was a 10 hour trip one way. Before surgery, S would have driven the entire way or we would have split the trip. We definitely would have made the trip in a single day. This time the trip took over 24 hours, including an overnight stop both ways. It was hard on me, it was hard on the kids and it was hell on S. Not to mention the additional expense for a hotel room.

I catch myself thinking "when he can drive again..." only to have to stop and remind myself that he will never be able to drive again. Out of all the changes, I cannot seem to wrap my head around this one. I will always be the only driver. He will never drive again. When will I come to accept that? Why is it so hard? What is the hardest thing for you to deal with in your situation?

I Am Not a Saint

Nor am I a robot. I get angry, jealous and tired. I get mad at God and at S. I want life to go back to normal. I want a day off. I want a vacation free from worry and pain (his and mine) and stress. I want a partner that can keep up with me and help with the kids and mow the lawn. If you are offended by this, please stop reading.

That does not mean that I am going to leave this relationship. It also does not mean that I am not going to do what needs to be done. It does mean that sometimes I cry and scream and swear. I'm human. I have my own issues. Sometimes I'm extremely selfish.

I hate the TV shows, magazine articles and books that portray the spouse or parent of a disabled individual as a saint. That's just not normal. What is normal (at least in my experience) is a human individual who gets mad at the disability. Who cries when they realize that it is never going to get better. Who gets frustrated and pissed off because their life is changed forever even though they are not the disabled person.

Am I proud of my bad behavior? No, of course not. I feel terrible when S walks into the bedroom and I'm crying because I'm tired or just plain frustrated. I feel terrible when I get mad at the person that asks "How is S?" but never asks "How are you?" I would probably say "Fine" anyway, but that's not the point. The point is this damn disability affects me, too.

The reason I bring this up, other than to get the record straight, is because we just returned from our first full vacation since S's first surgery. It was not pretty. I am rather disappointed and tired. We learned a lot about what S can and cannot do but the "relaxing" part of the vacation never happened. At least not for me.

I will tell you about it tomorrow. Tonight, I am going to sleep. There is no rest for me and that is just a fact of life.

Trip Planning

Our family is in desperate need of a vacation. S has been on short term disability as he learns to cope with the fact that he can no longer drive and will be in constant pain for the foreseeable future.  The pain and the pain medications both affect his ability to work.  While working with his therapist, he has also been fighting to remain on short term disability and get paid regularly. It has been hell. He has been spending more time fighting to get paid than he has been working on adapting to the situation.

His STD claim has been approved and we can finally plan our trip. This is where my own version of hell comes in. I am still coming to terms with the fact that I am the only driver in our family. I despise driving, but someone has to do it. To get to where we want to go, I will be driving for eight hours. My mother in law has kindly offered to give us the money for a hotel room at the half way point, so the trip will be broken into two portions. One problem solved.

The next problem isn't so easy. S has trouble sitting for more than an hour at a time. Even with frequent rest stops, this trip is going to be tough on him. We are hoping that his new doctor will increase his pain medication for the trip down and back. Otherwise, I don't know that we can make it.

We are also planning on camping. This is one of our true pleasures as a family and not one that we are willing to give up. I am spending an incredible amount of time finding ways to make it easier for S. I've already taught our 11 year old son to help me put up and take down the tent. I have found some chairs that S can stand to sit in. I am going to buy a double thick air mattress and possibly a folding lounge chair so that he can put his feet up. 

I truly believe that getting away from our house will do him (and the rest of us) a world of good.  With good planning, this trip should be a success. Yes, we should probably find a place closer to home, but we are going to one of his favorite vacation spots.  I have no problem doing extra work to make this trip memorable and relaxing for him.

If you have any suggestions, please let me know.

Tolerance, Dependence, and Addiction

Tolerance is a patient's need for an increasing quantity of medication in order to achieve the same effectiveness.

Physical dependence, by contrast, is a known effect of certain types of medication and is characterized by symptoms of withdrawal that differ among medicines...Medically speaking, physical dependence is not considered to be either postive or negative.

Addiction..is primary, chronic disease influenced by psychosocial and environmental facters.  It is also strongly genetic.  Addicts are not made from people who do not have the appropriate genetic makeup.  Exposure to pain medications..does not create addicts.  Psuedoaddiction is a syndrome in whcih patients who desperately seek relief from undertreated pain mimic the behavior of those seeking drugs for different reasons, and this merely clouds the picture.  People in genuine chronic pain suffer the more because these distinctions are not generally understood. 

Arthur Rosenfeld: The Truth About Chronic Pain

After reading the first part of Rosenfeld's book, I realized that S's struggles to get proper pain medication are not unique.  What is unique is the fact that he has bipolar disorder.  Bipolar individuals often self medicate with alcohol, narcotics and other illegal drugs.  They are much more susceptible to addiction in the true sense of the word. S was automatically classed with the drug addicts and drug seekers before he even explained what hurt.

After his second surgery, S wanted to get off the narcotics all together.  He was sick of the constipation, the fight with his doctor to get the proper dosages, and, above all, he was sick of being seen as a drug addict.  He was still in excruciating pain, but he was so humiliated by how he was treated that he felt the pain was better than fighting for proper pain management.  His psychiatrist actually asked him "Are you out looking for street drugs, yet?" When S responded with an emphatic "NO!" His doctor came back with "You will be."

His primary care physician told him flat out that he would no longer prescribe any pain medication and to either admit himself into a rehab program or experience withdrawal and all the wonderful things that come with it alone.
The neurosurgeon--who started him on the medications in the first place and later put him back on them--referred him to a pain management clinic.

The doctor at the pain management clinic told him that because of his bipolar disorder and the extent of the surgeries, S could not take the normal route of steroids and nerve oblation. The only option open to him was narcotics, but they could not prescribe narcotics because he was bipolar. "Go back to your family physician."

He tried to withdrawal at home. It was horrible. I had just had a baby less than a month before. We had been warned that because of the high dosage of medications he had been taking, he could end up with seizures and possibly die.  I just couldn't deal with that and a newborn, so he admitted himself into a rehab eight hours away from where we lived. It was the only one with an open bed.

He was not addicted to the medication. He was dependent on it. Just like I am dependent on my medication. If I am not properly stepped down from my medication, I go through severe withdrawal symptoms--dizziness, disorientation and possible suicidal thoughts. My doctor will step me down when it is time. The difference between me and S? My medication is a non-tricyclic antidepressant and his are narcotics.

The ironic part of this story? Within a month of returning from the rehab program, it was discovered that the second fusion had failed which explained the horrible pain he was experiencing and the need for additional pain management. His neurosurgeon prescribed an even higher dose of pain medication than he had been taking to get him through until the third surgery could be performed.  And, to add to the fun, we were told the third surgery was only to ensure that his spine was properly supported. The chances of actual pain relief were slim to none. We were looking at starting the medication game all over again.