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.

The Medication Game

Part One of Arthur Rosenfeld's book The Truth About Chronic Pain: Patients And Professionals On How To Face It, Understand It, Overcome It covers the stories of people who live in chronic pain.  Most of these stories mirrored, in part, S and my situation.  For example, Mary Vargas' husband sees her pain as the third partner in their marriage.  Allyson Gabrey comments "I don't want to spend the rest of my life lying on the couch, why should I?"

Both S and I have had those types of thoughts many times.  Whenever I plan a trip or function, I have to think about how the trip will affect S's pain levels.  Is it a "change the patch" day?  Can we schedule the trip during medication peak?  How will the pain be when we get there?

The same is true for day to day activities.  S is not working, and I work from home, which makes things easier in some respects.  We also send the kids to daycare so that he gets a period of "downtime" during the day.  But, because of his pain levels, he cannot plan to do anything during the hours the kids are at school. He needs to keep himself as pain free as he can so he is not already in the hole when they get home.  This could change if he could increase his pain medication, but the doctor will only prescribe a certain dosage.

This seems to be a common fight for people in pain.  Dr. Gerald Young says it best (in Rosenfeld's book) when he says "Very few doctors look to titrate up to where the patient says, "Hey, this is great! I feel good!"  If the patient says they feel good, it's time to titrate down!"

I understand that doctors are afraid of addiction and the DEA, but why in this day and age should a person live in constant pain.  They are only given enough medication to "take the edge off?" but not to be pain free.  Yes, chronic pain sufferers become dependent on their medications, but so do individuals with chronic depression, diabetes, and heart disease.  The pain sufferers are not addicted, they are dependent.  There is a distinct difference which I will discuss in tomorrow's post.

The Drug Stigma

According to the Institute of Medicine (IOM), approximately 116 million people in the United States suffers from chronic pain.  The report acknowledges that,  "For many people, however, pain prevention, assessment, and treatment are inadequate." This is a subject S and I are intimately familiar with.

Because of the stimga attached to narcotics, it is virtually impossible for some people to get access to the pain relief that they desperately need.  S uses a narcotic pain patch and oral narcotics for breakthrough pain.  Due to medication interactions and his bipolar disorder, narcotics are the only effective pain medication he can take without a risk of extreme mania.

However, whenever he sees a new doctor or takes a trip to the emergency, he is almost seen as a drug seeker.  Even if he is there for something other than the pain and never once asks for his medication.

Case in point, I recently had to take S to the emergency room.  He was "falling asleep" without warning, no matter what he was doing.  It came on suddenly and scared both of us rather badly.  We called his insurance company's nurse line and the nurse suggested that it might be extremely low blood pressure.  We tried most of the day to raise his blood pressure, but the episodes continued.  It was a Friday afternoon and there was no way we were going to be able to see his regular doctor and I was frightened that his blood pressure would drop low enough to due permanent damage or kill him.

To their credit, the ER doctors actually did do every test that they could to rule out a stroke, heart or lung problems or an infection.  But, I could hear the doctors and nurses talking and they automatically assumed drug addiction.  As test after test came back negative, there was more and more talk of addiction and rehab at the nurses station.

After 4 hours, I asked that he be given his regular medication dose because I had left in a hurry and forgot to bring a dose from home.  My request was outright denied.  He was even denied his psychiatric drugs, even though it was well past his time to take them.  He was forced to lie there in excruciating pain for another four hours.

Once, while S was passed out, the doctor came to suggest taking him off all of his medication, including his psychiatric drugs.  I just kind of looked at him like he was insane and said "no, thank you.  He is on these medications for a reason."

After 8 hours,  S was released with the helpful answer of "reduce the levels of your pain medication."  By that time I wanted to punch the doctor in the face, but I managed to smile, nod and get S dressed and out the door without any yelling or violence.  I was pretty darn proud of myself!

Fast forward a couple of days to S's regularly scheduled therapy session.  He told his psychologist what was going on, and she knew exactly what happened.  The stress from fighting with his disability insurance company combined with his barely managed pain levels were causing him to experience blackouts.  He wasn't falling asleep.  His blood pressure was not low.  His body was just shutting down.

Had the doctor taken him off his medications, he would have probably experienced them more frequently.  Not to mention the fact that his bipolar disorder would be completely unmanaged and he would not be able to walk or function on his own due to extreme pain. 

I have been reading The Truth About Chronic Pain: Patients And Professionals On How To Face It, Understand It, Overcome It by Arthur Rosenfeld which discusses in detail, the stigma of narcotics and the problems people have with getting adequate pain relief.  Over the next couple of days, I will share my thoughts and feelings about this book.  I recommend it to anyone living with a chronic pain condition.