Yesterday, late morning, I had to go to the emergency room because I simply could not take the pain any longer.
I am in chronic pain because of the damage to my joints from juvenile rheumatoid arthritis which the doctors believe I was born with. It was finally diagnosed when I was 2 1/2 years old. This isn’t really a big secret. I have blogged about this often, and even though many people are curious about how I live my life with such chronic pain it really isn’t special to me. It is old hack. However, recently there has been no help what-so-ever in handling/dealing with the pain because of new statutes passed by the government here in Kentucky.
The statute that was passed is supposed to keep drug addicted people off of the payroll as far as food stamps and AFDC are concerned, i.e. welfare. In order for anyone to receive these benefits in Kentucky you have to have a pee test, drug test to show you are not on drugs so you can receive the needed aide. This falls under a very large bill called CASPR or CASPeR.
CASPeR says that people on pain medication cannot go out of state for any pain medications or treatment. Patients with chronic pain must sign a contract with their primary care provider saying they will not go anywhere else seeking pain medication. It also puts a watch committee out there to see which doctors require the contracts and actually keep up with them. Because my pain is severe my primary care doctor is afraid of getting into trouble with assigning me any pain medications and has transferred my pain care to a pain management group. My first appointment with this pain management group is 5/28. The last time I have had any pain medication was in April. It wasn’t much, but it kept the worst of the pain down to a dull roar where I could function. Without even that help – and trust me here, it wasn’t anything like Oxycontin or a major pain drug, but it was a very low milligram narcotic I took twice a day as needed. Some days I didn’t need it at all because I could manage. Some days I had to take one tablet in the morning and one at night. In the middle I use ibuprofen, tai chi, and exercise to keep me moving and keep the pain down.
Right after my primary care physician stopped giving me any medical help for pain my arthritis flared. I have been in agony now for weeks and my primary care physician has not even tried to help me.
Yesterday I had to go to the emergency room for some relief because a) I have not truly slept in many days; 2) the pain was making it difficult to breathe and I was breaking out in pain sweats; 3) my blood pressure, despite my blood pressure medication was getting too high to be safe; and 4) I simply did not have any mental or emotional stores left to deal with it and keep my head above the pain filled water.
Because of CASPR I was pretty sure the E.R. would see me and send me away. I was up front with the doctor and told him I was in great pain and if he just wanted to give me a shot intramuscular and send me home this would be fine. He said that wasn’t going to happen, at least not for a while about me going home. He gave me an IV with pain meds, an inflammatory, and a nausea medicine. I had not truly been able to eat for several days but forced myself because I knew I had to eat.
The E.R. doctor ran tests and verified that yes I am having a flare. Yes, I am in pain. Yes, I needed some help, but he could not keep me, though he really wanted to to just give me some relief. Before sending me home he gave me 2 shots of a high pain medication, the last of which was not diluted very much and I was functioning normally This means, yes, I was in a ton of pain and was finally able to breathe and move with some comfort.
Tomorrow I am supposed to see my primary care physician. I am supposed to see if she can do something to help me with the pain, but I am afraid she is too frightened of CASPR to really do anything because the government has stepped into my care and regulated what she can and cannot give me and under what criteria she can give me something and what she cannot and it has nothing to do with my physical needs. This was all done to keep “drug addicts” in control.
My question is: What about those of us who really are in chronic pain and not addicts? Why am I, and so many others, being treated as if we are criminals and drug dealers who have always done what we were supposed to do and followed all the rules so we could stay alive and have some semblance of a life? This doesn’t make sense. I have lived for soon-to-be 53 years with this disease and my body has fought every day of it against me and me for it, but now my doctors are not able to help me fight at all without the threat of having their licenses revoked. What does a Senator or a Representative know about my physical needs and my health needs? They don’t.