Part of the difficulty in dealing with the whole going blind thing is that the status quo keeps changing on me. Each of four setbacks changed things, as did the cataract surgery, the PRP sessions, bouts of improvement, and the double procedure of vitreous exchange and retina reattachment. There should be another change with a procedure slated for sometime down the line, when they drain the silicon oil from my eye and replace it with something that should allow for natural vitreous reformation.
The prescription of the prednisone and the development of the Charcot foot both also seriously undermine what I can do, and both those situations will also change.
The positive aspect is that the changes that can be expected should all be improvements. There’s a lot of hope I cling to there.
I do seem to get a lot of sincere compliments about how well I cope with all this. I know that the coping had been good, but I am, too aware of my private times of despair and hopelessness to grade my efforts as highly as others do.
I’ve clawed my way through the two and a half years since the hemorrhage with tools that all too often caused conflict in my life: obstinacy; a warped and off color sense of humor; cocky certainty; foolhardy courage; an unwillingness to readily surrender to my gut even when "everyone" would tell ne I was wrong.
My didactic life has been full of adversity, always one more thing to cope with and adapt to, literally since birth. None of it killed me, so all of it made me stronger.
I’ve learned to cover some of that strength these days. My unyielding demeanor had always been something people–particularly the parade of control freaks through my life–didn’t like about me, That solid strength in a slight frame and relative youth and among people who destroy anyone who fails to acquiesce to their presumed mastery carried me through.
It continues to carry me, and it often continues to surprise. These days I am trying to develop a kinder, gentler persona that meshes better with what people "expect" from a blind guy.
But I’m still not ready for a red and white cane because I will beat people with it.
Friday, March 30, 2012
Wednesday, March 28, 2012
Dropping the (Eye)ball
The surgeon/doc who performed the retina reattachment and vitreous exchange prescribed four medications via eye drop.
The first was an antibiotic that she discontinued after a week. Knowing I no longer needed it quelled the imaginings of maladies in the eye, such as some alien pillar of disgust growing out of my eye or a more realistic fear that if something happened behind the eye that the eye might have to be removed.
I know longer have enough reading vision even with glasses to know what most of the other three are by name. I know them by what they do.
The first dilates the pupil. The pupil can stiffen and work less ably following reattachment, so this helps keep it nimble, so to speak. It has the side effect of increasing glare and over exposing things. I am not sure how standard this is as I had documented pupil function issues prior to the reattachment surgery.
Glaucoma numbers among the risks of retina attachment surgery. The second drop keeps the eye pressure down. This drop was not doing the job for me, so the doctor prescribed an additional job to do the same thing. My eye pressure had not reached the danger zone of over 30, but post op was not at my usual good range of 14-18 either.
The third drop is prednisone. This is the first medication that I can ever remember having adverse reaction to. I should say adverse reactions. I’m in stomach acid overload, suffer frequent vertigo and generalized weakness, further insomnia and fatigue, and am having nervous symptoms including worse mood changes and tics that have been driving many of the people around me nuts, even more than normal. Prednisone can also increase eye and blood pressure, so I am needing medication for my medication.
But I continue to take it with the hoped of long term recovery.
The course of drops also diminishes my vision when applied, so I am really hoping the long term gains pan out.
In the meantime, I can only hope most people can’t quite differentiate my increased mood changes and tics from the old oddities.
The first was an antibiotic that she discontinued after a week. Knowing I no longer needed it quelled the imaginings of maladies in the eye, such as some alien pillar of disgust growing out of my eye or a more realistic fear that if something happened behind the eye that the eye might have to be removed.
I know longer have enough reading vision even with glasses to know what most of the other three are by name. I know them by what they do.
The first dilates the pupil. The pupil can stiffen and work less ably following reattachment, so this helps keep it nimble, so to speak. It has the side effect of increasing glare and over exposing things. I am not sure how standard this is as I had documented pupil function issues prior to the reattachment surgery.
Glaucoma numbers among the risks of retina attachment surgery. The second drop keeps the eye pressure down. This drop was not doing the job for me, so the doctor prescribed an additional job to do the same thing. My eye pressure had not reached the danger zone of over 30, but post op was not at my usual good range of 14-18 either.
The third drop is prednisone. This is the first medication that I can ever remember having adverse reaction to. I should say adverse reactions. I’m in stomach acid overload, suffer frequent vertigo and generalized weakness, further insomnia and fatigue, and am having nervous symptoms including worse mood changes and tics that have been driving many of the people around me nuts, even more than normal. Prednisone can also increase eye and blood pressure, so I am needing medication for my medication.
But I continue to take it with the hoped of long term recovery.
The course of drops also diminishes my vision when applied, so I am really hoping the long term gains pan out.
In the meantime, I can only hope most people can’t quite differentiate my increased mood changes and tics from the old oddities.
Wednesday, March 7, 2012
Rising Pressure
The elevated blood pressure was a major concern regarding the retina reattachment surgery. The doctor would have preferred to postpone the surgery entirely and was concerned afterwards about excess bleeding.
I chose to push ahead. I had been mentally preparing for the all-or-nothing surgery for more than a month in a time that was seeing so many other problems erupt in life. My vision had been deteriorating rapidly. I have a tendency to push ahead once my mind is made up. As much as most other people see me as decisive and stubborn, I actually second guess myself a lot and overthink most things. The blood pressure could have been a convenient excuse to delay or cancel the potentially devastating surgery. Once I make ne excuse, sometimes keep them coming. Overcompensating for that makes me stubborn sometimes.
Up until October of 2011, my BP tended to run on the higher end of normal. It did not peak above 145/90 and was often lower. The last test in October saw 137/78, not bad at all.
The next time it was taken, in December, it had spiked dramatically: 212/123. The assistant at the sports medicine place had taken t when I was there to have the Charcot foot treated. That was the same morning that another pool of floaters had let go in the eye while I was in the waiting room. I figured anyone’s BP would be high under the circumstances. I meant to follow up with a drug store freebie test but never did. I learned it had stayed elevated during pre-op tests the week before the surgery. The starter dose of Lisinopril did little for it.
Labwork shows my sodium in its usual low level; I really do tend to eat right. There’s been increased stress from most fronts lately, but my theory is that the Charcot foot itself is behind the sudden BP rise. The foot has been swollen and sunken, and flow to the foot is impaired.
Time will tell, and in the meantime I am taking a high dose of a drug I have traditionally avoided because it’s one of those things that can be dangerous to stop.
I chose to push ahead. I had been mentally preparing for the all-or-nothing surgery for more than a month in a time that was seeing so many other problems erupt in life. My vision had been deteriorating rapidly. I have a tendency to push ahead once my mind is made up. As much as most other people see me as decisive and stubborn, I actually second guess myself a lot and overthink most things. The blood pressure could have been a convenient excuse to delay or cancel the potentially devastating surgery. Once I make ne excuse, sometimes keep them coming. Overcompensating for that makes me stubborn sometimes.
Up until October of 2011, my BP tended to run on the higher end of normal. It did not peak above 145/90 and was often lower. The last test in October saw 137/78, not bad at all.
The next time it was taken, in December, it had spiked dramatically: 212/123. The assistant at the sports medicine place had taken t when I was there to have the Charcot foot treated. That was the same morning that another pool of floaters had let go in the eye while I was in the waiting room. I figured anyone’s BP would be high under the circumstances. I meant to follow up with a drug store freebie test but never did. I learned it had stayed elevated during pre-op tests the week before the surgery. The starter dose of Lisinopril did little for it.
Labwork shows my sodium in its usual low level; I really do tend to eat right. There’s been increased stress from most fronts lately, but my theory is that the Charcot foot itself is behind the sudden BP rise. The foot has been swollen and sunken, and flow to the foot is impaired.
Time will tell, and in the meantime I am taking a high dose of a drug I have traditionally avoided because it’s one of those things that can be dangerous to stop.
Sunday, March 4, 2012
Post-Op: Blurred Vision and Mind
The retina reattachment surgery lasted somewhere around four hours. I’m not sure exactly how long as I was completely unconscious, and can’t really see clocks, watches, or my cell phone display well enough to ever really know what time it is anyway. Four hours is a longer session for the procedure. The results may be disappointing to undetermined in final analysis, but I do know that this doctor tried his best.
I left the hospital with the eye bandaged and covered by a plastic shield. The shield was more than an eyepatch; the hard plastic would ensure that the eye wouldn’t squish on itself in my sleep. I was specifically told to sleep on the left side. I assume that would allow better drainage of blood.
They sent mer home with a course of four eye drops, a combination of antibiotics and a steroid and other goodies. I can’t see the bottles well enough to know what they are. The doctor dropped one of them the following week, but added another to reduce the increased pressure in the eye, a condition caused by the drops.
I do remember what one of the four drops I am, still taking is: prednisone. ‘Ve most definitely been feeling the side effects of that one. These include increased irritability (like most people can tell from my normal levels;) worsening of my insomnia (like most people can tell from my normal levels;) and increased mood changes, mental disturbances and other nervous ticks (like most people can tell from my normal levels.) The prednisone has also hit mer with excess stomach acid bad enough to lead to vomiting, elevated blood pressure, and is the med responsible for the heightened eye pressure in the eye getting the drops. I am happy to report with a sound knock on wood that I have had no bleeding or bruising issues and have not developed irregular periods. That last one would be pretty freaky.
These side effects have added to the stresses of needing to cope with (hopefully temporarily) further reduced vision and the bad foot and the need to accept that I will probably never be "whole" again. I’m working on that, but ask for patience from those who must deal with me while I may seem a bit (more) off.
I left the hospital with the eye bandaged and covered by a plastic shield. The shield was more than an eyepatch; the hard plastic would ensure that the eye wouldn’t squish on itself in my sleep. I was specifically told to sleep on the left side. I assume that would allow better drainage of blood.
They sent mer home with a course of four eye drops, a combination of antibiotics and a steroid and other goodies. I can’t see the bottles well enough to know what they are. The doctor dropped one of them the following week, but added another to reduce the increased pressure in the eye, a condition caused by the drops.
I do remember what one of the four drops I am, still taking is: prednisone. ‘Ve most definitely been feeling the side effects of that one. These include increased irritability (like most people can tell from my normal levels;) worsening of my insomnia (like most people can tell from my normal levels;) and increased mood changes, mental disturbances and other nervous ticks (like most people can tell from my normal levels.) The prednisone has also hit mer with excess stomach acid bad enough to lead to vomiting, elevated blood pressure, and is the med responsible for the heightened eye pressure in the eye getting the drops. I am happy to report with a sound knock on wood that I have had no bleeding or bruising issues and have not developed irregular periods. That last one would be pretty freaky.
These side effects have added to the stresses of needing to cope with (hopefully temporarily) further reduced vision and the bad foot and the need to accept that I will probably never be "whole" again. I’m working on that, but ask for patience from those who must deal with me while I may seem a bit (more) off.
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