... always a flower child, I guess. On my birthday this year as I enter my sixth decade, I'm ruminating on love and its many definitions. In The Four Loves, C S Lewis wrote that there are four types of love (affection, friendship, eros & charity). As much as I admire his writings, I suspect there are many more than four if we really think about it.
My very favorite type of love is charity, which I believe can be expressed as forgiveness, compassion, generosity, empathy, sympathy ... and I bet you can think of others I forgot. Charity-love is for me the hardest to practice consistently, and the most lacking in our world today. Mother Teresa is my model for perfect charity-love. While I know I'll never approach her saintliness, I read from her book No Greater Love and try to grow through her wisdom almost every day. I still have a very long way to go. :)
The Sixties was about free love, anti-war love, loving change, but with the Sixties came a concept that I fear we have overdone a bit, and that's self-love. As parents and teachers, it seems to me we have placed too much focus on self-love for a couple of generations, and the societal results are clear: materialism; hate-mongering for those who aren't just like us; hero worship for athletes & celebrities who haven't earned our respect but reflect how we want to envision ourselves; churches where we demand entertainment instead of soul-searching and reflection. Maybe I'm just getting old, but it looks to me like this whole self-love thing isn't working out well for mankind as a species, and particularly for American society.
So, my annual reflection on where I stand and what I plan for the coming year leads me to this resulting resolution - I am going to concentrate on sending my love-energy outward and see how that goes. I will try not to miss an opportunity to display through my actions that I believe every living creature is deserving of my love. I will try to have more empathy for people who aren't just like me, people who make mistakes, people who may be harder for me to love than myself.
I guess you can take the sixties away from the flower child, but you can't keep the flower child out of her sixties. Peace, man!
Sunday, August 21, 2011
Friday, August 19, 2011
Hold On - We're Making a Quick 180!!
Well. What a difference a day makes. My rheumotologist called me Wednesday - yes, the doctor herself! After pleasantries were exchanged, she got right to business.
"Are you drinking alcohol? No." Have you started taking any medications I haven't prescribed, even OTC stuff? No."
"Well then, I want you to stop your methotrexate therapy immediately, no more injections. Uh, okay...why?"
I'll spare you further transcription of our conversation (you're welcome). My liver enzymes are through the roof on the every-two-months bloodwork I had done on Monday. MTX has started to cause liver damage, which is a pretty common side effect. After a 3 week cleansing period, I will visit the rheum's office for a loading dose of Cimzia, her strong recommendation for my first biologic. She has urged me to go with Cimzia, because it's much faster acting than the other drugs in its class, and we'll know in 90 days if it's going to work, rather than the grueling 6-9 month trials other drugs require to assess effectiveness.
Ironically, all my angst over starting a biologic drug, and my triumphant decision to give it the go ahead, lovingly committed to the ether here on my blog, is essentially moot - a complete waste of the energy and importance I gave it. Maybe this will seem humorous at some point in the future ... the faaaarrrr future.
Right now, it just seems like another of ra's dirty little tricks, another insult to body & mind & the fragile illusion of control that I continue to cling to.
Being an unrepentant control freak, I don't handle these twists & turns so well. It reminds me of an experience as a passenger in a 1969 Camaro hotrod a few years back. As the ranger of a state park that contained the steepest, curviest 3.4 mile mountain road in New England, I hosted a number of races on that road - foot races, luge (where the fools ride skateboards 60 mph down the twisty road lined with huge boulders - but that's a story for another day), bicycle races, and of course car races. I was offered a ride in the Camaro during a practice run for the semiannual car races. Sounded cool. Might have been if I were driving, but the guy who was driving decided he would do his best to make me pee my pants. For months after, the only vehicles I rode in on that mountain road had me at the wheel - did I mention I like control?
Guess I need to just buckle up, because apparently ra is in the driver's seat on this ride. Control is just an illusion.
"Are you drinking alcohol? No." Have you started taking any medications I haven't prescribed, even OTC stuff? No."
"Well then, I want you to stop your methotrexate therapy immediately, no more injections. Uh, okay...why?"
I'll spare you further transcription of our conversation (you're welcome). My liver enzymes are through the roof on the every-two-months bloodwork I had done on Monday. MTX has started to cause liver damage, which is a pretty common side effect. After a 3 week cleansing period, I will visit the rheum's office for a loading dose of Cimzia, her strong recommendation for my first biologic. She has urged me to go with Cimzia, because it's much faster acting than the other drugs in its class, and we'll know in 90 days if it's going to work, rather than the grueling 6-9 month trials other drugs require to assess effectiveness.
Ironically, all my angst over starting a biologic drug, and my triumphant decision to give it the go ahead, lovingly committed to the ether here on my blog, is essentially moot - a complete waste of the energy and importance I gave it. Maybe this will seem humorous at some point in the future ... the faaaarrrr future.
Right now, it just seems like another of ra's dirty little tricks, another insult to body & mind & the fragile illusion of control that I continue to cling to.
Being an unrepentant control freak, I don't handle these twists & turns so well. It reminds me of an experience as a passenger in a 1969 Camaro hotrod a few years back. As the ranger of a state park that contained the steepest, curviest 3.4 mile mountain road in New England, I hosted a number of races on that road - foot races, luge (where the fools ride skateboards 60 mph down the twisty road lined with huge boulders - but that's a story for another day), bicycle races, and of course car races. I was offered a ride in the Camaro during a practice run for the semiannual car races. Sounded cool. Might have been if I were driving, but the guy who was driving decided he would do his best to make me pee my pants. For months after, the only vehicles I rode in on that mountain road had me at the wheel - did I mention I like control?
Guess I need to just buckle up, because apparently ra is in the driver's seat on this ride. Control is just an illusion.
Wednesday, August 17, 2011
How to be a Real Man
My friend Ray died this morning, in his house with his family by his side. It stinks that he died, it stinks that his last year was all chemo and radiation and doctors and hospitals. And most of all, it stinks that there aren't that many men like him these days, and we'll miss the pleasure of his company.
Ray found out he had metatastic cancer last August. He and his wife Shirley were on their long-planned trip to Alaska when suddenly, he couldn't breath. He was flown home, underwent tests, and got the very bad news - multiple organs, lungs, brain. It is phenomonal that he did so well for so long, but Ray decided he had things and people to take care of.
He continued in his volunteer position with our Property Owner's Association - sometimes he was out of pocket due to hospitalizations and treatment - but there was a neighborhood that needed taking care of.
Ray also made sure his family was taken care of so they would have no day-to-day worries when he was gone. He took care of the paperwork to give his son his truck. He sent the kids out with Shirley to get her a new car so she would have a warranty and no service problems. He even made his own funeral arrangements, so his loved ones wouldn't have that burden in the days after his death.
Ray arranged for hospice care when he got the latest bad report. He came home and prepared to die. He discouraged us from visiting him these last couple of weeks, and I'm convinced he was once again taking care of his friends so they wouldn't remember him with sadness.
I definitely won't remember him with sadness - admiration, respect, fondness. How can you be sad about a man who knew exactly how to live, and - when it was his time - knew exactly how to die?
Forget the sports stars, the movie stars, the politicians and musicians - my friend Ray was a role model for how to be a Real Man.
I'm sure gonna miss him.
Ray found out he had metatastic cancer last August. He and his wife Shirley were on their long-planned trip to Alaska when suddenly, he couldn't breath. He was flown home, underwent tests, and got the very bad news - multiple organs, lungs, brain. It is phenomonal that he did so well for so long, but Ray decided he had things and people to take care of.
He continued in his volunteer position with our Property Owner's Association - sometimes he was out of pocket due to hospitalizations and treatment - but there was a neighborhood that needed taking care of.
Ray also made sure his family was taken care of so they would have no day-to-day worries when he was gone. He took care of the paperwork to give his son his truck. He sent the kids out with Shirley to get her a new car so she would have a warranty and no service problems. He even made his own funeral arrangements, so his loved ones wouldn't have that burden in the days after his death.
Ray arranged for hospice care when he got the latest bad report. He came home and prepared to die. He discouraged us from visiting him these last couple of weeks, and I'm convinced he was once again taking care of his friends so they wouldn't remember him with sadness.
I definitely won't remember him with sadness - admiration, respect, fondness. How can you be sad about a man who knew exactly how to live, and - when it was his time - knew exactly how to die?
Forget the sports stars, the movie stars, the politicians and musicians - my friend Ray was a role model for how to be a Real Man.
I'm sure gonna miss him.
Tuesday, August 9, 2011
Cover the Mirrors, Don your Black Threads....
My family is in mourning, but no one knows. We are fortunate that we haven't lost a loved one. What they mourn is life as we knew it just a short year ago.
Sometime in the last few months, dawn has broken and my family has realized that I may not ever be who I once was. At the risk of sounding brash, I was the spark plug of our family life; the one who had ideas, planned & executed gatherings, cooked too much food, urged the grandkids to try new things, and cared for those who needed help. I was Type A and proud of it - my mantra was "let's make it happen!" My family is seeing what I have known for a long time - this rheumatoid arthritis is not just an illness that you treat and it goes away.
Since my diagnosis with ra (I am now refusing to grant it capitalization in my blog - take that!), I rarely have the energy to make more happen than personal hygiene and basic household chores. In fact, as I type this I'm sitting in my pajamas at 1:20 in the afternoon because I'm not quite up to showering & dressing "for the day".
I have left my job, stopped my volunteer activities, and essentially become the last person they can count on, because I never know what pain, stiffness and fatigue each day will bring. I often have to cancel plans at the last minute with family and friends. It's just the nature of the disease, and frankly, I have become very selfish of my energies because I've found I fear the payoff if I overdo. Two of my grandsons came for their week at Nana's in June and determined to make some fun for them, I was too active - I spent the next 10 days in the worst disease flare I have had since starting treatment. I can actually see the damage that those 10 days caused when I look at my hands. I simply can't risk that happening again until I find a medication that is suppressing my disease activity better.
So, I have a plan (Type A all the way). After resisting, studying, soul-searching, vacillating ... I have decided to take my doctor's advice and start one of the new biologic drugs for ra (didn't forget, you won't get a big letter out of me!) I hate the idea of putting that crap into my body for many reasons, but mostly because it's so new and no one knows what the long-term effects can be. I have decided to choose hope of improvement over fear of what may be.
And I've decided to choose a chance at returning to the person I used to be over the safety of being the person I've become. Because I want my family to mourn me after I'm gone, not now.
Sometime in the last few months, dawn has broken and my family has realized that I may not ever be who I once was. At the risk of sounding brash, I was the spark plug of our family life; the one who had ideas, planned & executed gatherings, cooked too much food, urged the grandkids to try new things, and cared for those who needed help. I was Type A and proud of it - my mantra was "let's make it happen!" My family is seeing what I have known for a long time - this rheumatoid arthritis is not just an illness that you treat and it goes away.
Since my diagnosis with ra (I am now refusing to grant it capitalization in my blog - take that!), I rarely have the energy to make more happen than personal hygiene and basic household chores. In fact, as I type this I'm sitting in my pajamas at 1:20 in the afternoon because I'm not quite up to showering & dressing "for the day".
I have left my job, stopped my volunteer activities, and essentially become the last person they can count on, because I never know what pain, stiffness and fatigue each day will bring. I often have to cancel plans at the last minute with family and friends. It's just the nature of the disease, and frankly, I have become very selfish of my energies because I've found I fear the payoff if I overdo. Two of my grandsons came for their week at Nana's in June and determined to make some fun for them, I was too active - I spent the next 10 days in the worst disease flare I have had since starting treatment. I can actually see the damage that those 10 days caused when I look at my hands. I simply can't risk that happening again until I find a medication that is suppressing my disease activity better.
So, I have a plan (Type A all the way). After resisting, studying, soul-searching, vacillating ... I have decided to take my doctor's advice and start one of the new biologic drugs for ra (didn't forget, you won't get a big letter out of me!) I hate the idea of putting that crap into my body for many reasons, but mostly because it's so new and no one knows what the long-term effects can be. I have decided to choose hope of improvement over fear of what may be.
And I've decided to choose a chance at returning to the person I used to be over the safety of being the person I've become. Because I want my family to mourn me after I'm gone, not now.
Wednesday, August 3, 2011
Chronic Pain is Not a Symptom
I can remember a few years ago when I thought I understood chronic pain. Simply put, chronic pain is any pain that lasts more than six months. But when it happened to me, I responded in typical manner by researching chronic pain to better understand.
It was then I realized how shallow my understanding really was.
For many years, I medicated for nagging pain with over-the-counter NSAIDs. But since my RA decided to get really serious about attacking joints & organs, I have experienced constant, daily and unrelieved pain that just isn't touched by nonprescription pain medications.
I am one of the lucky ones. My rheumatologist asks about my pain, listens, and makes pain management an important element of my disease treatment plan. Through my participation in RA support groups, I have learned that her approach is somewhat uncommon. It is shocking to me that many, many RA patients report their rheums refuse to prescribe pain medications. Some even refuse to refer their patients to pain management clinics, or question the patient's description of pain, saying things like, "You have no joint damage, so you couldn't be in the pain you're describing." It's impossible for me to imagine how I would respond if a trusted doctor said that to me, but I suspect it wouldn't be pretty.
Effects of chronic pain are well-documented:
Sleep disturbances and resulting fatigue;
neurochemical changes that cause ever-increasing sensitivity to pain;
increased tension, anxiety and fear of injury;
weakened immune response;
depression and/or anger;
and more.
Consider that all of the items on that list are effects of Rheumatoid Arthritis (or its treatments) even without chronic pain. Add chronic pain, and it's no leap in logic to assume that one should attack both elements of the disease with equal vigor to achieve best results and a semblance of normalcy for your patient.
I believe that chronic pain is an integral part of my disease, not a symptom. And that treating that pain is as important to my overall health and ability to battle the disease as any of the other treatments I undergo.
It was then I realized how shallow my understanding really was.
For many years, I medicated for nagging pain with over-the-counter NSAIDs. But since my RA decided to get really serious about attacking joints & organs, I have experienced constant, daily and unrelieved pain that just isn't touched by nonprescription pain medications.
I am one of the lucky ones. My rheumatologist asks about my pain, listens, and makes pain management an important element of my disease treatment plan. Through my participation in RA support groups, I have learned that her approach is somewhat uncommon. It is shocking to me that many, many RA patients report their rheums refuse to prescribe pain medications. Some even refuse to refer their patients to pain management clinics, or question the patient's description of pain, saying things like, "You have no joint damage, so you couldn't be in the pain you're describing." It's impossible for me to imagine how I would respond if a trusted doctor said that to me, but I suspect it wouldn't be pretty.
Effects of chronic pain are well-documented:
Sleep disturbances and resulting fatigue;
neurochemical changes that cause ever-increasing sensitivity to pain;
increased tension, anxiety and fear of injury;
weakened immune response;
depression and/or anger;
and more.
Consider that all of the items on that list are effects of Rheumatoid Arthritis (or its treatments) even without chronic pain. Add chronic pain, and it's no leap in logic to assume that one should attack both elements of the disease with equal vigor to achieve best results and a semblance of normalcy for your patient.
I believe that chronic pain is an integral part of my disease, not a symptom. And that treating that pain is as important to my overall health and ability to battle the disease as any of the other treatments I undergo.
I am very lucky that my rheumatologist knows the secret to compassionate treatment of RA and its sister Chronic Pain. I'd say that I wish she could share this secret with other docs who treat RA patients ... but that would be wrong.
Her secret is that she has RA.
Friday, July 29, 2011
RA Treatment and Morton's Fork
Morton's Fork is a term used to describe a choice with equally unpleasant results. The term is named for John Morton, a tax collector in the reign of Henry VII who used the following logic to collect taxes:
If a person chose to live well, he must have plenty of money to pay taxes to the King. If a person chose to live very frugally (or had to), he must have plenty of savings to pay taxes to the King. So, people began to say they were skewered on the prongs of "Morton's Fork".
The term is rarely used nowadays except to describe a Bridge playing maneuver.
I am currently taking weekly self-injections of Methotrexate (MTX), a chemotherapy drug that's been around for decades, and is the go-to drug of choice in attacking active RA for most rheumatologists. MTX has earned a spot as first-line treatment, because in low doses it is relatively safe and relatively effective in slowing or stopping disease progress; stopping disease progress means damage to joints, tissues & organs is halted - that's the golden ring we're all reaching for, and what my doctor defines as true remission.
MTX can cause some well-documented common side-effects like hair loss, mouth sores, nausea, stomach cramps & higher risk of infections. It is also associated with some less common but much scarier problems like liver damage, lung damage, neuropathies and increased risk of lymphoma. The best news where these risks are concerned is that there is a long history of MTX use in the real world, so its easy for me & my doctor to watch for indications of any of the wicked side effects.
MTX is the first prong of my Morton's Fork - I have accepted the risks & unpleasant side effects in hopes of achieving remission.
Unfortunately not only have I not seen remission in 8 months of MTX therapy, but I haven't seen sufficient reduction of disease activity to hold off joint damage. So, Dr. A has advised me that she wants me to try a biologic drug in addition to the MTX in hopes of beating my crazed immune system into submission.
Biologics are (simply put because I am after all somewhat simple) not the chemical combinations that are so many of our medicines invented in earlier decades. They are created through recombinant dna processes and may replicate or mimic the actions of our own proteins, antibodies, and other elements of our body's complex functions. For instance, one of the classes of biologic drugs for RA is designed to "flip a switch" in some cells that inhibits the production of a protein shown to initiate immune response, thereby reducing the damaging inflammation of rheumatic diseases.
Biologic therapies are pretty new, pretty impressive, and pretty promising. But - and this is a great big but - they bring another set of potentially life-threatening side effects, and the added risk that there are long-term health risks that we just haven't seen yet because they are so new.
Biologics are the second prong of my Morton's Fork.
To complicate things even further, I don't get to trade one risky drug therapy for a second risky drug therapy - I ADD it. Biologics are proven more effective when used together with MTX, which suppresses unwanted immune response to the biologic actions.
So in summary here are my choices:
Stay with current treatment, current side effects, current unacceptable results;
Add a biologic drug that will increase side effects, I don't know exactly what it will do to my body in the long term, in hopes of better results;
Toss the whole treatment thing, treat for pain, and wait for the inevitable deformity & crippling.
Geez man, I just wish I could pay my taxes and call it a day.
If a person chose to live well, he must have plenty of money to pay taxes to the King. If a person chose to live very frugally (or had to), he must have plenty of savings to pay taxes to the King. So, people began to say they were skewered on the prongs of "Morton's Fork".
The term is rarely used nowadays except to describe a Bridge playing maneuver.
I am currently taking weekly self-injections of Methotrexate (MTX), a chemotherapy drug that's been around for decades, and is the go-to drug of choice in attacking active RA for most rheumatologists. MTX has earned a spot as first-line treatment, because in low doses it is relatively safe and relatively effective in slowing or stopping disease progress; stopping disease progress means damage to joints, tissues & organs is halted - that's the golden ring we're all reaching for, and what my doctor defines as true remission.
MTX can cause some well-documented common side-effects like hair loss, mouth sores, nausea, stomach cramps & higher risk of infections. It is also associated with some less common but much scarier problems like liver damage, lung damage, neuropathies and increased risk of lymphoma. The best news where these risks are concerned is that there is a long history of MTX use in the real world, so its easy for me & my doctor to watch for indications of any of the wicked side effects.
MTX is the first prong of my Morton's Fork - I have accepted the risks & unpleasant side effects in hopes of achieving remission.
Unfortunately not only have I not seen remission in 8 months of MTX therapy, but I haven't seen sufficient reduction of disease activity to hold off joint damage. So, Dr. A has advised me that she wants me to try a biologic drug in addition to the MTX in hopes of beating my crazed immune system into submission.
Biologics are (simply put because I am after all somewhat simple) not the chemical combinations that are so many of our medicines invented in earlier decades. They are created through recombinant dna processes and may replicate or mimic the actions of our own proteins, antibodies, and other elements of our body's complex functions. For instance, one of the classes of biologic drugs for RA is designed to "flip a switch" in some cells that inhibits the production of a protein shown to initiate immune response, thereby reducing the damaging inflammation of rheumatic diseases.
Biologic therapies are pretty new, pretty impressive, and pretty promising. But - and this is a great big but - they bring another set of potentially life-threatening side effects, and the added risk that there are long-term health risks that we just haven't seen yet because they are so new.
Biologics are the second prong of my Morton's Fork.
To complicate things even further, I don't get to trade one risky drug therapy for a second risky drug therapy - I ADD it. Biologics are proven more effective when used together with MTX, which suppresses unwanted immune response to the biologic actions.
So in summary here are my choices:
Stay with current treatment, current side effects, current unacceptable results;
Add a biologic drug that will increase side effects, I don't know exactly what it will do to my body in the long term, in hopes of better results;
Toss the whole treatment thing, treat for pain, and wait for the inevitable deformity & crippling.
Geez man, I just wish I could pay my taxes and call it a day.
Friday, July 8, 2011
Rheumatoid Arthritis is Not for Sissies
One of my favorite quotes of all time is from Katherine Hepburn. When asked in an interview about health problems at age 81, when she suffered mobility issues and an ever more maddening palsy, she said, "Old age ain't for sissies." I always liked that statement, but I think
I now truly get it.
Kate Hepburn and others who are lucky enough to grow old live everyday with limitations, aches & pains, worries that the rest of us don't really understand. It's hard work.
In the two years since my Rheumatoid Arthritis went into fulltime active disease, I think I
have begun to really understand what it means to live with RA in a way I simply couldn't, even though my mother had mild RA. For those who wonder what it's like to have RA, let me try to explain in a way I guarantee you haven't read in an article or seen in a drug commercial:
Have you ever had an earache? Or a toothache? One of those pains that actually elicits a moan or a groan?
Try to imagine for a moment, that toothache. Imagine that it's in several different places in your body all at once. And you are exhausted, because toothaches cause fatigue.
Now, imagine that it simply never goes away.
Imagine that you go to the doctor, and he tells you there is nothing wrong to cause that pain. So you go to another doctor - a specialist - because it's not possible that there is no reason for that pain.
Imagine that the specialist tells you there is nothing wrong.
Time passes, you work up your courage to see another doctor, then another. Finally, someone decides you should see a rheumatologist (or like me, you research your symptoms on the internet and ask for a referral to a rheumatologist.)
The rheumatologist sends you for labwork, x-rays, examines you and names the reason for your pain and fatigue - finally! You are given prescriptions and told to take multiple pills or injections, or infusions. Some of these drugs have terrifying warning labels, some are used for cancer treatment, some are so new that long-term effects aren't known. The drugs make you vomit, they make your hair fall out, they give you headaches, acne, joint pain, chills, or other side effects. But you take them because you want to get well, and because sometimes they make your toothache feel a bit better.
Imagine that the toothache doesn't go away for long, if at all. Imagine that the drugs get stronger and stronger. And finally...
... imagine that you will do this for the rest of your life, because there is no cure for your toothache.
That toothache is Rheumatoid Arthritis. And let me tell you buddy, Rheumatoid Arthritis is not for sissies.
I now truly get it.
Kate Hepburn and others who are lucky enough to grow old live everyday with limitations, aches & pains, worries that the rest of us don't really understand. It's hard work.
In the two years since my Rheumatoid Arthritis went into fulltime active disease, I think I
have begun to really understand what it means to live with RA in a way I simply couldn't, even though my mother had mild RA. For those who wonder what it's like to have RA, let me try to explain in a way I guarantee you haven't read in an article or seen in a drug commercial:
Have you ever had an earache? Or a toothache? One of those pains that actually elicits a moan or a groan?
Try to imagine for a moment, that toothache. Imagine that it's in several different places in your body all at once. And you are exhausted, because toothaches cause fatigue.
Now, imagine that it simply never goes away.
Imagine that you go to the doctor, and he tells you there is nothing wrong to cause that pain. So you go to another doctor - a specialist - because it's not possible that there is no reason for that pain.
Imagine that the specialist tells you there is nothing wrong.
Time passes, you work up your courage to see another doctor, then another. Finally, someone decides you should see a rheumatologist (or like me, you research your symptoms on the internet and ask for a referral to a rheumatologist.)
The rheumatologist sends you for labwork, x-rays, examines you and names the reason for your pain and fatigue - finally! You are given prescriptions and told to take multiple pills or injections, or infusions. Some of these drugs have terrifying warning labels, some are used for cancer treatment, some are so new that long-term effects aren't known. The drugs make you vomit, they make your hair fall out, they give you headaches, acne, joint pain, chills, or other side effects. But you take them because you want to get well, and because sometimes they make your toothache feel a bit better.
Imagine that the toothache doesn't go away for long, if at all. Imagine that the drugs get stronger and stronger. And finally...
... imagine that you will do this for the rest of your life, because there is no cure for your toothache.
That toothache is Rheumatoid Arthritis. And let me tell you buddy, Rheumatoid Arthritis is not for sissies.
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