Repost: Why have I always asked my wonderful Christian friends not to make praying for my healing a priority?
I am very grateful for their prayers, and for the love and sympathy they express. However, I just don't believe that my healing is a priority. I base this on Romans 8:18: "For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us." (NASB) If present pain is not worthy of comparison with future glory, then relief from pain is not a priority, preparing for glory is.
It would be presumptuous to compare my pain and weakness with Paul's suffering (see 2 Cor 11:23-25) or to claim that my "suffering" is the result of persecution as his was; it is not! However, the context of Rom 8:18 applies to all Christians. The suffering Paul speaks of is a consequence of living in a fallen world. It is our share in a world subjected to futility, groaning for its final liberation, Rom 8:19-25.
Even the foretaste of the future, granted to us by the indwelling Holy Spirit, aggravates our pain. It causes a deeper dissatisfaction with things as they are now and a much greater longing for the resurrection of the body.
Paul's reference to the sufferings of this present time also refer back to his previous paragraph, too (vv. 9-17). Verse 18 is a hinge between the two paragraphs. There is genuine pain associated with "putting to death the deeds of the body" even though we follow the leading of the Spirit when we do it.
So, when Paul speaks of the "sufferings of this present time" he is talking about the pains, weaknesses, yearnings, anxieties all we Christians share. We will continue to experience them until the coming glory, the future, is fully here.
Praying for holiness is a much higher priority than healing.
Tuesday, September 01, 2009
Sunday, July 19, 2009
Health Update
Despite my original intent to post only a single entry about my health, I've posted several and am about to post another. I have reconnected with several old friends because of these posts. I've received many expressions of concern. Thank you all!
Here's my latest update. I went to The Myositis Center at Johns Hopkins both in January and May. During the January visit, the rheumatologist ruled out polymyositis. Initially, she thought my muscle MRIs definitely confirmed some form of myositis; there was clear evidence that the muscle in the back of my thighs had been damaged and replaced with adipose tissue. My thighs looked like well-marbled steaks. However, there was no other confirmation of polymyositis. She also decided that I had a neurological disorder primarily. She still thought inclusion-body myositis, which is untreatable as well as incurable, was a possibility.
That very same day, she got a consult from her partner, a neurologist. He gave me the most extensive neurological review I had had to that point. He seemed to be fascinated, especially, by my lack of sensation in my feet and in patches of my legs, arms, and hands. He also demonstrated, through his tests, that I had lost any sense of balance. With my eyes closed, I could not tell whether he was moving my big toe up or down, or at all. Neither could I tell whether I was standing or falling. We scheduled a follow-up neurological appointment for May.
I had loads of tests leading up to the appointment: spine and brain MRIs, a lumbar puncture (i.e., spinal tap), blood tests, and a skin biopsy in which they counted my sensory nerve fibers. I fully expected that the emphasis of the appointment would again be on the problem with my sensory nerves. Instead, the neurologist focused exclusively on my motor nerves. (I had somehow put on a bunch of muscle mass on my legs between January and May.) He decided there was nothing mechanical that should prevent normal movement. He did not arrive at any definitive diagnosis. He believes I have an upper motor neuron disorder, either Primary Lateral Sclerosis (a less severe form of Lou Gehrig's disease, though very, very rare) or Parkinson Plus Syndrome. He stated, however, that this would be inconsistent with my positive reaction to steroids. The most definitive statement in his clinical notes was that he had ruled out any reversible, treatable, or curable lower motor neuron, muscle, nerve, or neuromuscular disorder. An upper motor neuron disorder is untreatable (apart from symptoms) by definition.
I do not agree at all with this semi-diagnosis. Corticosteroids saved me. Without them I was not able to get in and out of bed, dress myself, etc. That was completely reversed within days as soon as I was put on the steroids. As I try to taper off the steroids (because of their terribly destructive side effects) I am beginning to experience that pain and helplessness again. I also believe that much of the loss of coordination the neurologist observed was due to loss of sensation rather than a movement disorder. It's hard to pick thinks up when you have no sensation in your fingertips!
Anyway, at this point it seems as though we've exhausted all our alternatives. I will continue to try to get off the steroids, and try to get some of the orthopedic issues with my spine taken care of (I now have two compression fractures). Otherwise, there's nothing for it except to wait.
Here's my latest update. I went to The Myositis Center at Johns Hopkins both in January and May. During the January visit, the rheumatologist ruled out polymyositis. Initially, she thought my muscle MRIs definitely confirmed some form of myositis; there was clear evidence that the muscle in the back of my thighs had been damaged and replaced with adipose tissue. My thighs looked like well-marbled steaks. However, there was no other confirmation of polymyositis. She also decided that I had a neurological disorder primarily. She still thought inclusion-body myositis, which is untreatable as well as incurable, was a possibility.
That very same day, she got a consult from her partner, a neurologist. He gave me the most extensive neurological review I had had to that point. He seemed to be fascinated, especially, by my lack of sensation in my feet and in patches of my legs, arms, and hands. He also demonstrated, through his tests, that I had lost any sense of balance. With my eyes closed, I could not tell whether he was moving my big toe up or down, or at all. Neither could I tell whether I was standing or falling. We scheduled a follow-up neurological appointment for May.
I had loads of tests leading up to the appointment: spine and brain MRIs, a lumbar puncture (i.e., spinal tap), blood tests, and a skin biopsy in which they counted my sensory nerve fibers. I fully expected that the emphasis of the appointment would again be on the problem with my sensory nerves. Instead, the neurologist focused exclusively on my motor nerves. (I had somehow put on a bunch of muscle mass on my legs between January and May.) He decided there was nothing mechanical that should prevent normal movement. He did not arrive at any definitive diagnosis. He believes I have an upper motor neuron disorder, either Primary Lateral Sclerosis (a less severe form of Lou Gehrig's disease, though very, very rare) or Parkinson Plus Syndrome. He stated, however, that this would be inconsistent with my positive reaction to steroids. The most definitive statement in his clinical notes was that he had ruled out any reversible, treatable, or curable lower motor neuron, muscle, nerve, or neuromuscular disorder. An upper motor neuron disorder is untreatable (apart from symptoms) by definition.
I do not agree at all with this semi-diagnosis. Corticosteroids saved me. Without them I was not able to get in and out of bed, dress myself, etc. That was completely reversed within days as soon as I was put on the steroids. As I try to taper off the steroids (because of their terribly destructive side effects) I am beginning to experience that pain and helplessness again. I also believe that much of the loss of coordination the neurologist observed was due to loss of sensation rather than a movement disorder. It's hard to pick thinks up when you have no sensation in your fingertips!
Anyway, at this point it seems as though we've exhausted all our alternatives. I will continue to try to get off the steroids, and try to get some of the orthopedic issues with my spine taken care of (I now have two compression fractures). Otherwise, there's nothing for it except to wait.
Saturday, February 28, 2009
RE: Post on Aug 12, 2008
It's really too bad that I've left the following post up here so long; it's far too negative. However, it turns out that August 12th was the most significant day for me in 2008.
The "old" compression fracture the ER doc found by pure luck on the x-rays was actually new. It took forever to find that out. Instead, I was treated for a muscle strain with muscle relaxants, which are really just tranquilizers, until I absolutely insisted on getting a full MRI of my spine and I took the film and report to my orthopedic surgeon. My PCP had, I was convinced, misinterpreted the report, telling me that since the fracture was so old it could not account for all the pain I was feeling. My orthopedist confirmed that the fracture was new. I finally received 3 transforaminal nerve block injections in January, 2009--5 months later.
The true significance of all this, however, was that the muscle relaxant wrecked my memory. For a long time I thought I was just being increasingly affected by the "brain fog" that is a side effect of steroids. Finally, I began to suspect that my mental impairment was far too severe to be attributed either to my steroids or to my disease. I searched the Physicians Desk Reference for possible adverse interactions among my medications and discovered that the muscle relaxant I was prescribed was explicitly contraindicated for patients taking one of the meds I already had. (Too many of my meds hit the central nervous system. Who knows how they're interacting?)
As a result, I have almost no memory of 2008. I can reconstruct some events with Terry's help; others are gone. The events of August 12th wrecked my memory for a year.
The good news is that I am getting my mind back. I'm still slower than I used to be, but that is to be expected for someone who takes as many meds as I do. I'm starting to be able to read again, but it's a slog.
The "old" compression fracture the ER doc found by pure luck on the x-rays was actually new. It took forever to find that out. Instead, I was treated for a muscle strain with muscle relaxants, which are really just tranquilizers, until I absolutely insisted on getting a full MRI of my spine and I took the film and report to my orthopedic surgeon. My PCP had, I was convinced, misinterpreted the report, telling me that since the fracture was so old it could not account for all the pain I was feeling. My orthopedist confirmed that the fracture was new. I finally received 3 transforaminal nerve block injections in January, 2009--5 months later.
The true significance of all this, however, was that the muscle relaxant wrecked my memory. For a long time I thought I was just being increasingly affected by the "brain fog" that is a side effect of steroids. Finally, I began to suspect that my mental impairment was far too severe to be attributed either to my steroids or to my disease. I searched the Physicians Desk Reference for possible adverse interactions among my medications and discovered that the muscle relaxant I was prescribed was explicitly contraindicated for patients taking one of the meds I already had. (Too many of my meds hit the central nervous system. Who knows how they're interacting?)
As a result, I have almost no memory of 2008. I can reconstruct some events with Terry's help; others are gone. The events of August 12th wrecked my memory for a year.
The good news is that I am getting my mind back. I'm still slower than I used to be, but that is to be expected for someone who takes as many meds as I do. I'm starting to be able to read again, but it's a slog.
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