After surviving years of marginalization as a chronic pain patient, I decided that self-advocacy was no longer a choice. I live in a state which has some of (if not THE) strictest pain medicine laws that exist. When I was unethically put on a “Non Narcotic Treatment” status by my pain clinic, it became glaringly clear how these new laws were going to directly affect me. I reached out to any and everyone I could, trying to figure out why (despite having had to be hospitalized for “Malignant Hypertension Due to Pain”) I could not get pain care. My own primary care physician told me if I wanted to get “the pain care I needed,” I would “need to move to another state. You will NOT get it here,” he said emphatically. Punctuating that statement with the suicide of one of our pain doctors as an example of the distress that Kentucky doctors are facing when it comes to pain medicine. Even if you don’t live in Kentucky, don’t be fooled…they’re coming for your state, too.
I found Sheila Purcell, Founder of Kentucky Pain Care Action Network, who told me the realities for pain patients in Kentucky, and I was at a loss. I began advocating. Eventually, after much trial and error, I found a terrific pain doctor…in another state. I now have to have my husband drive me four hours each way, once a month. If it meant being treated by a knowledgeable, compassionate doctor, who treated me with respect, I decided it was worth it. I began talking to him about the dire conditions in my state, and how many people I heard from as a pain advocate on a daily basis.
My pain doctor LISTENED. As he starts his new chain of clinics, and after getting to know me better, and reading some of my articles, he asked me to be on his board, as a Patient Advocate. In the process, I began pushing him to open a clinic in Kentucky. After hearing me beg for months, he went ahead and got licensed in Kentucky (as well as six other states). As an effort to influence his decision to come to Kentucky, I started a petition https://www.change.org/p/kentucky-board-of-medical-licensure-kentucky-general-assembly-kentucky-state-senate-kentucky-state-house-kentucky-governor-bring-elite-medical-pain-management-clinic-to-kentucky-pain-care-for-kentucky-s-suffering?recruiter=14188163&utm_source=share_petition&utm_medium=copylink
In addition, as an advocate with Kentucky Pain Care Action Network, I have also started a petition to amend our legislation, which is denying legitimate pain patients the basic human right to proper pain care. https://www.change.org/p/gregory-stumbo-jack-conway-kentucky-state-house-kentucky-medical-association-demand-adequate-pain-care-as-a-human-right-for-kentuckians/u/13551000
Thanks to Steve Ariens, I’ve been able to share this information with his readers, who may not live in Kentucky, but who need to support these movements either way, because the laws change by other state’s example, and we are all in this together. Also, you may need a compassionate, knowledgeable pain doctor in your state, and my doctor just might be coming your way…if you show that you are interested. We pain patients need to show the government and doctors that we will not just sit down and shut up. That we WILL be heard. Please join me in taking the first steps to doing so.
Filed under: General Problems
I am in Kentucky also..
Becky, I hope you’re getting the care you need, and will show your support for the cause by signing the above petitions!
Just read your post Emily and so glad you did not sit back and suffer, maybe die behind this travesty. As you may know we are fighting the same issue in Montana, we now have a membership of 1600 plus, “In Support of Dr.Mark Ibsen”. A “Pain Patients Bill of Right’s” is also being written now and will be presented at the next Legislative session. Steve Ariens has contributed his expertise to our cause also. Thx for the post!!
Thanks for the encouragement, Maureen. I follow Dr. Ibsen’s plight closely. We need more doctors like him. I hope you will share your Bill of Rights on this site, and we would love your support on our petitions!
Thank you for all of your hard work in Kentucky. I will be sharing this with friends, as I have a few in the state of Kentucky, but more who live in the Southeastern portion of Indiana. As the area, is rural and borders on the OH/KY state lines, it is not uncommon for people to travel to the Kentucky area for advanced medical care. I also have family in IL who sometimes travel to Ky for the same reasons. This is an issue that effects more than just residents of one state. Thanks again.
Kathy, your support is greatly appreciated. And, you make an excellent point; this is a fight that ALL chronic pain patients (and citizens with an ounce of humanity) must take part in. You do not have to live in Kentucky to sign the petitions, and we all have to stick together…if we don’t make our voices heard on this issue, the removal of our human right to get adequate pain care will proliferate, and I promise you, it will NOT only be in Kentucky! Thanks again!
am in
I hope this means you’re in by way of signing the petitions! 😉
TY Emily for your efforts on this. I hope to relocate to KY in the next several years. The access to appropriate care to help me endure my chronic pancreatitis and the pain it causes will be a major determining factor in the decision.
Casandra, thanks for your comments. I hope you will join me by signing both of the above petitions, if we don’t make progress, I assure you, you will NOT receive the care you need when you arrive in Kentucky!