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.
Wednesday, July 6, 2011
Monday, July 4, 2011
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.
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.
Tuesday, June 28, 2011
Why I Hate the Word "Caregiver"
Caregiver: (n) a person who cares for someone who is sick or disabed. (Dictionary.com)
Photo Credit: Ronny Jaques. National Film Board of Canada. Photothèque. Library and Archives Canada
Yes, I fit in this category. But, I purposely do not use this word to define my relationship with S. I use a lot of words to define my role, but not this one. I feel it adds a sense of superiority and resentment to my side of the relationship. One spouse feeling superior to another in a relationship spells the doom of the relationship. Unless you've just won a really good argument. But, that sense of superiority will go away at the next argument. Anyway, S and I are equals. Neither one of us are superior (no matter what he tells you!).
The resentment is discussed in any caregiver website you look at or book you pick up. The article listing at Caregiver.com includes articles such as:
- A Silent Crisis: Working Caregivers Are Begging For Help
- Caregiver Burnout
- Depression in the Caregiver
- Caring For The Caregiver
- Give Yourself a Break
- Managing Caregiver Guilt
- Respite Care Spells Relief for Stressed Out Caregivers
- When and How To Say "No" to Caregiving
I've worked in the social services field for a long time before having my kids and maybe that is what colors my perception. No matter what job I had, I was told at the onset not to expect it to be a life long career. "You will get burned out," they told me.
Well, I plan on being with S for at least another 30 to 40 years. I can't afford to get burned out. So, instead of defining us as caregiver and caregetter, I simply say our roles have changed and I focus on what he can do, rather than what he cannot do.
Does resentment still rear its ugly head? Hell, yeah, I'm not perfect. Since his first surgery, I have taken on more and more responsibilities. Things that he used to do without thinking -- mow the lawn, move furniture, clean out the dryer vent -- are now up to me. Plus, the inevitable ups and downs are incredibly frustrating. One day he has no problem caring for our 1 year old child. The next day he can barely stand to get a shower. Even though I understand this is the nature of both his diseases, I get tired and angry and resentful.
But, then I remember that I got angry and resentful even before he was disabled. And, he got angry and resentful with me. Doesn't every spouse have feelings like that once in awhile? These feelings are temporary and will go away.
I also remember that I'm not really angry with him. I'm more or less angry with the disease. S would rather help mow the lawn and play with the kids, than lay on the couch in constant pain. It's really hard to remain angry at something that can't fight back, so I let it go.
This is why you will rarely see me use the word "caregiver" on this site, unless I'm discussing someone else's ideas. I am my children's caregiver, not my partner's.
Monday, June 27, 2011
About Us
Photo by Michael Dorausch
Three years ago, my fiance, S, started a long journey to repair a herniated disc that included two posterior lumbar and one anterior lumbar fusions. Due to his inability to grow bone, the posterior fusions never "took". The anterior fusion was simply to stabilize his spine. The area where the disc used to be is now completely encased in a titanium cage. The titanium cage does not move like the rest of the spine, which puts pressure on the discs above the fusion. The failed fusions, combined with the pressure on the adjacent discs have left him in constant pain, unable to stay in one position for any length of time and on heavy narcotics. He will never get better without a miracle, he will probably get worse, and he's 40 years old.
In addition to his back problems, S also has rapid cycling bipolar disorder. We have spent the last five years finding and tweaking the medicine that works for him. Unfortunately, his bipolar medication causes his body to absorb the narcotics at a much higher rate than most other people. And, the narcotics affect the way his body handles the bipolar medication. He walks a very fine line, medication wise.
As anyone who lives with and loves a person with a disability knows, his health problems do not only affect him. It affects the whole family. As his partner (for lack of a better term), I have become an "expert" in S. Ask me anything about his medications, how they interact, what happens when he misses a dose, his pain levels, his moods, etc., I can give you the answer. I am his advocate, his cheerleader, his chauffeur (he doesn't drive), his nurse, his whipping bag, his spouse. The order of these roles changes on a daily basis. I am the person who tells the doctor how it really is, because S is so sick of talking about it and just wants it to go away. I pick up the pieces of our life that he can no longer do along with the chores I already did. And, I try to smile while doing it. I am 37 years old.
I am starting this blog to help other people in my situation. There is all kinds of information out there for caregivers for the terminally ill or older individuals. What about those of us with small children and a life ahead of us? How do we deal with the fact that our plans for the future are drastically changed? How do we deal with the fact that we will be living with this for the next 40 years? Where do we fit in? My hope is that I can be a help to other people in my situation and that they can help me.
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