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So I've been dealing a cluster of issues since the mid-1980s. Gradually, over the years, these issues have been diagnosed, named, addressed via different strategies:
~ In 1984, diagnosed with adult onset asthma.
~ In 1989, began dealing with eye inflammation, soreness, excessive tears, dryness, etc all of us associate with dry eye syndrome. In 2003, after years of medical adventures and misdirection, I was diagnosed with MGD and blepharitis. Bounced thru various meds, treatments, surgeries, etc that so many of us have tried.
~ Per tests, I'm hyper-allergic to dust and cats, somewhat less allergic to dogs. Over the last year I've apparently become or become more allergic to certain, yet-to-be-identified outdoor triggers so that I now get hyper-reactions when I spend too much time outside.
~ In 2006, the various issues combined(?), ran parallel courses(?), better verb(?) to create major, sustained eye and lung problems.
~ In 2007, after 6 months of immunotherapy (allergy shots) addressing cats and dust, I experienced dramatic improvement on the allergy front giving me 6 years of relief where I only had to manage asthma and dry eye issues. Life was pretty good.
~ In early-2013, after being flattened by 6 weeks with the flu and changing jobs and states for the 3rd time since the Great Recession (so stress is likely also a factor), my immunotherapy effect vanished.
~ Since mid-2013, I've been in a health crisis mode. I work mostly from home rather than the office (I'm a researcher/educator), hide from allergens, fight with doctors, am 8 months into a new round of immunotherapy (for cats, dust & dogs) that has yet to take, am on a "bridge regimen" of 9 prescriptions meds,.... Oh, and, am dealing with depression and anxiety from months of isolation, but that's for another thread. Am lucky to have a great boss and flexible work situation.
~ In 2014, I've made it through the winter in okay, never good shape, but with the re-emergence of spring allergens acoupla weeks ago, I'm back in hyper-allergic mode. Again, to "triggers" I've never tested as allergic to.
~ What's consistent, over the years, is that eye, lung and even sinus congestion problems all track together. Allergic reactions worsen or stress increases, my eyes, lungs and sinuses all go south.
I'm not sitting back waiting to see what happens. I always working on another angle, e.g., just ordered most protective 7eye outdoor wear, am limiting outdoor exposure, am looking for an air conditioner for summer that filters the outside air, etc.
But after almost 30 years of this I am still struggling to find a solution. It's my perception that the healthcare system is part of the problem. (And I have great coverage.) Today in 2014, each doctor I visit, as far as I can tell, sees a different patient. My allergist, who doesn't believe that allergies and DES are in any way connected, treats a guy with allergies. She is incapable of explaining why I'm hyper-sensitive to something other than dogs, cats and dust. My ophthalmologist, who deals with eye health and disease, is oblivious to allergies as a complicating factor and stays right inside his wheelhouse, occasionally adjusting another guy's eye meds. "See you 6 months!" My primary physician listens carefully and doggedly keeps steering me back to the specialists. "They know best about ___________!" My new optometrist is surprisingly tuned in to DES, but of course mostly stays focused on updating yet other guy's eye prescription. None of these people have ever spoken to each other about any of the guys they're treating. And the length of the standard exam works against a more thorough context for Drs' decisions. With all these health resources in motion, I'm hopeful that this round of immunotherapy will again give me relief - even tho it doesn't address outside allergens, but the future does not look good. The future looks scary. And my doctors are talking and treating past each other.
It's been suggested by two doctors that I'm atopic, that the list above is a cluster of conditions, a larger syndrome than just DES. Is this true? If so, what does this mean? Am I diagnosable and/or treatable atopically? If so, who/how/where does this happen?
Clearly the current system is not a comprehensive approach. Is there another, atopish or not, more comprehensive approach available for a guy, and I'm still just one guy, like me?
I live/work in MN. Several colleagues have suggested the Mayo Clinic as a place that'll "put an interdisciplinary team together" to resolve my unique set of issues. Is this real? Does anyone know? Do they have a different approach? Or would they just replicate my current set set of parallel universes on one medical campus? My insurance would cover most associated costs. 4 hour drive one-way. Changing doctors again. So trade-offs.
A long post. Thanks for your patience. Open to any/all ideas that point towards a less scary future.
~ In 1984, diagnosed with adult onset asthma.
~ In 1989, began dealing with eye inflammation, soreness, excessive tears, dryness, etc all of us associate with dry eye syndrome. In 2003, after years of medical adventures and misdirection, I was diagnosed with MGD and blepharitis. Bounced thru various meds, treatments, surgeries, etc that so many of us have tried.
~ Per tests, I'm hyper-allergic to dust and cats, somewhat less allergic to dogs. Over the last year I've apparently become or become more allergic to certain, yet-to-be-identified outdoor triggers so that I now get hyper-reactions when I spend too much time outside.
~ In 2006, the various issues combined(?), ran parallel courses(?), better verb(?) to create major, sustained eye and lung problems.
~ In 2007, after 6 months of immunotherapy (allergy shots) addressing cats and dust, I experienced dramatic improvement on the allergy front giving me 6 years of relief where I only had to manage asthma and dry eye issues. Life was pretty good.
~ In early-2013, after being flattened by 6 weeks with the flu and changing jobs and states for the 3rd time since the Great Recession (so stress is likely also a factor), my immunotherapy effect vanished.
~ Since mid-2013, I've been in a health crisis mode. I work mostly from home rather than the office (I'm a researcher/educator), hide from allergens, fight with doctors, am 8 months into a new round of immunotherapy (for cats, dust & dogs) that has yet to take, am on a "bridge regimen" of 9 prescriptions meds,.... Oh, and, am dealing with depression and anxiety from months of isolation, but that's for another thread. Am lucky to have a great boss and flexible work situation.
~ In 2014, I've made it through the winter in okay, never good shape, but with the re-emergence of spring allergens acoupla weeks ago, I'm back in hyper-allergic mode. Again, to "triggers" I've never tested as allergic to.
~ What's consistent, over the years, is that eye, lung and even sinus congestion problems all track together. Allergic reactions worsen or stress increases, my eyes, lungs and sinuses all go south.
I'm not sitting back waiting to see what happens. I always working on another angle, e.g., just ordered most protective 7eye outdoor wear, am limiting outdoor exposure, am looking for an air conditioner for summer that filters the outside air, etc.
But after almost 30 years of this I am still struggling to find a solution. It's my perception that the healthcare system is part of the problem. (And I have great coverage.) Today in 2014, each doctor I visit, as far as I can tell, sees a different patient. My allergist, who doesn't believe that allergies and DES are in any way connected, treats a guy with allergies. She is incapable of explaining why I'm hyper-sensitive to something other than dogs, cats and dust. My ophthalmologist, who deals with eye health and disease, is oblivious to allergies as a complicating factor and stays right inside his wheelhouse, occasionally adjusting another guy's eye meds. "See you 6 months!" My primary physician listens carefully and doggedly keeps steering me back to the specialists. "They know best about ___________!" My new optometrist is surprisingly tuned in to DES, but of course mostly stays focused on updating yet other guy's eye prescription. None of these people have ever spoken to each other about any of the guys they're treating. And the length of the standard exam works against a more thorough context for Drs' decisions. With all these health resources in motion, I'm hopeful that this round of immunotherapy will again give me relief - even tho it doesn't address outside allergens, but the future does not look good. The future looks scary. And my doctors are talking and treating past each other.
It's been suggested by two doctors that I'm atopic, that the list above is a cluster of conditions, a larger syndrome than just DES. Is this true? If so, what does this mean? Am I diagnosable and/or treatable atopically? If so, who/how/where does this happen?
Clearly the current system is not a comprehensive approach. Is there another, atopish or not, more comprehensive approach available for a guy, and I'm still just one guy, like me?
I live/work in MN. Several colleagues have suggested the Mayo Clinic as a place that'll "put an interdisciplinary team together" to resolve my unique set of issues. Is this real? Does anyone know? Do they have a different approach? Or would they just replicate my current set set of parallel universes on one medical campus? My insurance would cover most associated costs. 4 hour drive one-way. Changing doctors again. So trade-offs.
A long post. Thanks for your patience. Open to any/all ideas that point towards a less scary future.
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