Tuesday, December 9, 2014

Dear Neil - An Open Letter

Dear Neil,

 Its been several days since I answered your email asking if I∩tersected  could help get your story told. I've heard no response.  I am very concerned and wonder where you are and how you are doing. To be severely depressed due to chronic, constant pain is unlike anything anyone else has been through. Everyone's experience of pain, and their ability to tolerate it, varies. My understanding of your situation is because you had an allergic reaction to one of your pain meds, you are being denied any pain meds and your eyes are a source of constant agony. Trying to manage anything else in your life with that to deal with is a nearly impossible thing for anyone to ask of you.

 I know because I spent my entire 19th year in excruciating pain while going blind from pressure on my optic nerves. So when I read your story on your blog (I've linked to so our readers can read it) I completely understood you. I've been there, and pray you are doing better. When a patient cannot take pain killers and must manage pain it takes so much concentration that any distraction can make you vomit with a pain spike. In addition, as you lose vision, things like hearing heighten, and one becomes even more sensitive to environmental noises.

  For Neil's story, mouse over this sentence or tap.

  The narrative of events related to your disability and potential ADA violation are actually two stories. One is the story of how the active ingredient in your prescription eye drops disabled you and caused your eyes permanent harm. The other is the story of how you tried to explain having an invisible disability to your neighbors and homeowners association and the escalation that happened after your concern not just that the noise of your neighbors dogs were unbearable, but that you felt the dogs were barking because they were victims of neglect, and your attempts to make this clear were derided and ignored. The fact that eventually one of the dogs died was, in your opinion, a clear indication that the dog was making noise because it was suffering.   I know in the protracted fight with your neighbors and HOA you ended up losing your health, your wife, and you home. I know this is the time of year when not having your family around you and being disabled and in pain is devastating. So I'm writing this now and hoping you'll somehow read it. You aren't alone. There are people who know what you are going through. Don't give up.

Before I go further, I need to post the link for the U.S. pain foundation just click here. This shows their current advocacy efforts. I was lucky because I'd grown up around disabled vets. I knew pain management existed beyond pain killers and had seen all the mistakes people can make managing pain as well as how a person can still achieve good quality of life while managing chronic pain. My stepfather, a Vietnam vet, used a TENS unit to manage some of his chronic pain.

Most people do not understand the impact of environment on those who suffer chronic pain. Ask the U.S. pain foundation for resources in pro bono legal advocacy to assist in pursuing your legal cases. You need an attorney who understands your situation and can help with your cause without further stress or financial devastation.

Has your medical professional considered biologics to treat your primary condition? You would need follow up from an infectious disease specialist but this might reduce your pain by reducing the autoimmune issues. Biologics are not pain medication. You can also be tested for allergies to other pain medications. US pain can help you find the solution of best fit to reduce your pain.  I am not trying to give you medical advice; I'm just presenting ideas that were helpful to my own situation and you might discuss with your doctors.

I hope there is an a fresh medical approach that can immediately reduce your pain and the accompanying depression and allow you to rest, and think clearly in order to work your way through your other crises. Let us know you are safe. U.S. pain also has a pain support group. You should not be alone trying to manage daily pain without knowing there are thousands of people going through what you are and willing to listen.

What people think doesn't matter. Who you used to be doesn't matter. We accept who you are. What matters is that you don't give up. You emailed me. I heard and understood you. So will others.

Never give up.



P.S. to readers here is a link to a peer reviewed research paper on the impact of noise on our health: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(13)61613-X/abstract

1 comment:

  1. I had to travel for Worker's Comp stuff. Just back. I got your emails, and ... am deeply touched and eternally grateful, both FOR those and -- particularly -- for this.

    Let me try to get caught up. I barely manage the day-to-day, so ... getting behind ... is a bit of a challenge.

    Meanwhile .... my humble, profound, and sincere thanks :-)


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